Disability & Chronic Illness Archives - Jan Mariet's A Day in the Life

Maintaining a Social Life with a Chronic Illness

When you have to frequently cancel plans at the last minute because of a chronic illness, you miss out on having a social life. You miss out on activities, games, new friendships, weddings, graduations, girls’ trips, guys’ nights, travel, craft fairs, home and garden shows, game nights, going out to dinner with friends, and every kind of celebration.

You feel left out because you are left out, even though it isn’t anyone’s fault. Eventually, your friends stop including you, and who can blame them? You become unreliable. It feels like too much trouble to include you. You stop getting asked. You start self-isolating to avoid constant disappointment, both yours and theirs.

When you stop being included and you are alone most of the time, you don’t really have much to talk about except the daily intrusions of your illness. That becomes too heavy to carry when it’s your only source of conversation. Something that is already uncomfortable becomes the center of every interaction. Over time, people, often without realizing it, start to distance themselves.

This is how people with chronic illnesses lose social connection and their sense of belonging. Isolation reduces anyone’s quality of life. When you feel like you’re merely existing instead of living, your mental and physical health suffer. When you don’t feel like you belong, you lose that lifeline that binds people together. The world feels bleak. You start to feel hopeless because you can’t see a way out of the isolation.

It’s often hard for an able-bodied person to understand just how isolating this life can be. It can be even harder to imagine ways around this isolation. Here are just a few ways that people with a chronic illness can stay connected and maintain a social life.

If You Are the Friend of a Chronically Ill Person

If you love someone whose health limits them, don’t just keep inviting them to things that are beyond what they can do. Instead, create activities and conversations where they can succeed. Make flexible plans. Keep visits short. Go to them when they can’t get out. Use Zoom or FaceTime when in-person visits aren’t possible. Meet them where they are. And don’t stop asking.

Focus on one-on-one time instead of group plans. Build simple micro-rituals, like a weekly 20-minute phone call or video chat. Replace big outings with couch chats or car-side visits. Those are much easier to manage than a two-hour concert or dinner in a crowded restaurant.

When you talk with your friend, don’t always lead with “How are you?” That centers the conversation on illness. Widen it. Ask about books they’ve read, shows they’ve watched, ideas they’ve had, memories they want to share, or their thoughts on current events. Let them exist as more than their symptoms.

If they have to miss an event they were really looking forward to, you can still include them. Step outside and video chat for a few minutes. Let mutual friends take turns saying hello. A small window into the gathering can mean more than you realize.

You could also watch the same show at the same time and text during it. Play online games together for short, flexible blocks of time. Choose a book you both want to read and message each other as you move through the chapters.

Remind yourself that most chronically ill people cancel because they physically cannot function, not because they don’t care. Holding on to that truth changes everything.

If You Are the Chronically Ill Person Who Is Trying to Stay Connected

If you’re the one who keeps canceling, don’t disappear in shame. Stay connected in small ways. Send a short text. Leave a voice message. Let people know you’re thinking about them.

If your world feels like it’s shrinking and your social life is fading, it’s okay to admit that not every friendship is meant to last forever. People move in and out of our lives. That’s part of being human.

Look for ways to bring new people into your world. Join an online support group. Play online games and connect with others who enjoy them. Start or join a writing group or interest group on Zoom. Building new friendships with chronic illness isn’t easy, but it isn’t impossible. Friendships may look different now, but you still have chances to build social connections.

Here are some other articles by Jan Mariet that you might enjoy:

When Change Sneaks Up on You – Jan Mariet’s A Day in the Life

Recognizing When You’re Struggling with Chronic Illness – Jan Mariet’s A Day in the Life

How People Disappear – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

Living with Invisible Losses: Finding Meaning in Chronic Illness – Jan Mariet’s A Day in the Life

Accessibility Is Not a Privilege

A decorative image of the author using her upright rollator.

As a person with a disability, I often get frustrated when people treat my need for accessibility as if it were a special privilege. I have heard people say, “Oh, you are so lucky you have a handicap parking placard.” I am not lucky that I need one. I would give anything to park at the far end of a lot and walk in without pain, fatigue, or risk. That is simply not an option for me.

Accessibility is not a favor. It is a basic right in our society. We have laws that are supposed to protect that right, yet those laws are not enforced the way they should be. Too many people, both in leadership and in the general community, still do not see accessibility as essential, so they ignore it, assuming nothing will happen if they cut corners. Most of the time, they are right and nothing does happen.

Even with laws in place, people with disabilities have to do extra work before going out. They search online for entrance photos, call ahead to ask about elevators, ramps, and accessible restrooms. and make backup plans in case those features are broken or blocked. Most people never have to think about any of this. For a person with a disability, it is part of daily life.

As a person with a disability, this is my reality because accessibility is often overlooked or an afterthought. Sometimes, the automatic door doesn’t work. The ramp might be hidden behind the building near the trash dumpster. The front door may be open, but the door leading from the ramp may be locked. There might be an accessible restroom, but it could be out of order for weeks or down a hallway made too narrow by chair storage. I’ve learned to expect these problems, but I shouldn’t have to.

So understand, I refuse express gratitude for the bare minimum. I’m not going to gush with thanks because a public space has a ramp or an elevator. They are basic requirements that allow disabled people to participate in everyday life. They are required. Expecting us to be thankful for access to the world around us is so unfair.

Real progress will only happen when businesses and public places stop treating accessibility as a charitable gesture and start treating it as a core responsibility. This will happen when enforcement is taken seriously and accessibility is seen as nonnegotiable. Equal access is not a special privilege. It is a fundamental right.

I Couldn’t Even Get in the Door – Jan Mariet’s A Day in the Life

Why Disabled People Are Still Shut Out of Leadership – Jan Mariet’s A Day in the Life

Reimagining Accessibility: Undoing Ableism Among Disabled and Medical Communities – Jan Mariet’s A Day in the Life

I Couldn’t Even Get in the Door

A Rollator and Wheelchair User’s Experience Navigating Inaccessible Medical Offices

Often, when I venture out into the ‘real world’ on days I need my upright rollator, I’m reminded just how inaccessible that world can be for rollator and wheelchair users. The places you would expect to be the most accessible, like doctor’s offices, are, in reality, often the least accessible. This is especially true for the smaller medical practices in older buildings and at specialists’ offices.

Almost every doctor’s office I’ve visited using my rollator has been surprisingly difficult to navigate. First, many of the specialists I deal with have only one or two handicapped parking places in very overcrowded parking lots, and they always seem to be taken.

I can understand that, and I park wherever I can, but often, the only way to get to the ramp that leads to the entrance if I’m not parked in the handicapped accessible parking spot means I have to walk in traffic to get to it, and that isn’t always safe. So often, the sidewalks at medical practices lack curb cuts until you get to the actual handicapped ramp. People who walk without assistance can utilize the sidewalks, but without appropriate curb cuts, wheelchair users and rollator users are forced to wheel behind parked cars that may back up at any minute, or risk rolling through the driving lane.

I live in an area where the number of people with handicapped placards is much higher than the actual number of handicapped parking places available. Our area has a large elderly population and honestly handicapped placards are held by a large percentage of our residents.

I don’t judge people, if they have a placard, then their doctor certified that they met the requirements and that they need it; I’m not going to argue with that. I realize many people have invisible disabilities, and I’m glad people get what they need.

But I can’t imagine how hard it is for wheelchair users with so few accessible spaces available. Most need to extend a ramp to get in and out of their vehicle, and you can’t do that in a regular parking space; they aren’t wide enough. So, if the accessible spaces are filled, they simply can’t get out of their van.

There are also people like me, who don’t necessarily need an oversized parking place, but I can only walk short distances. I can’t tell you how many times I’ve had to call inside a medical office to tell them that I’m outside in the parking lot, but because I can’t find a parking space close enough that I can actually walk in, that I’m going to be late. It’s great that they have an overflow lot across the street, but I can’t walk that far, even with my rollator.

Once I get there, and find a parking space that is close enough that I can get in, I’m faced with the fact that there are rarely automatic or accessible doors at doctors’ offices. The doors at doctors’ offices are typically security doors, and they are incredibly heavy, and nearly impossible to open while using an upright rollator. If you have weak arms or hands, or are a person seated in a wheelchair, they are next to impossible to open.

You have to remember, not every person in a wheelchair is being pushed by a caregiver. Many wheelchair users are on their own, and have lightweight chairs they can push themselves, or powerchairs. The doors to most doctor’s offices are not made to be opened from a seated position, or when both hands are occupied by a rollator or crutches.

Once you get inside the doctor’s office, the check-in desk is usually too high for a wheelchair user which makes checking-in a bit awkward. As a rollator user, I don’t have that issue, but it does make me stand further back from the desk, and if they hand me a clipboard and pen, I can’t carry it and hold on to my rollator. Rollators, like crutches, take both hands. Holding it under my arm makes it awkward, too.

I’ve noticed there is almost never open space for a person in a wheelchair to “sit.” Instead, there are rows upon rows of chairs but with no designated open areas for wheelchairs to remain while waiting, which means they end up parked in the walkway, and that’s really awkward. It must be frustrating to be in the way and there is nothing you can do about it.

As a rollator user, I can tell you, there is rarely a place where I can sit and keep my upright rollator within reach. Usually, there are tables, or other rows of chairs in the way. Often, I have to ask other people to move so I can find a place I’ll fit.

People are very nice about it, and often move without me saying a word, but sometimes, they are absorbed in their own issues, or busy on their cell phone, and they don’t notice. It can be uncomfortable to have to ask people to rearrange themselves for me. It’s hard to ask strangers ‘for a favor’ because the waiting room isn’t set up for the assistive devices many people use.

My upright rollator is customized, and many people are curious about it. I tend to field questions from other people in the waiting room about where I got it, would it work for their aunt or mother-in-law, and that it looks so much better than a regular rollator. I don’t mind answering their questions, but sometimes when you are at the doctor’s office, you aren’t at your best, and you’d really rather just be left alone.

Once you are called into a clinical room, you often have to follow a medical assistant down a long, narrow hallway. They tend to walk very quickly, which is something people using rollators or crutches aren’t really able to do. I can’t tell you how many times the medical assistant disappears around a corner, and I stand there lost until they come back looking for me.

If there is an exam table, it often lacks grab bars or any way to use it safely. The token two-step platform attached to most exam tables offers little help for people with balance issues or who cannot safely climb steps. Adjustable exam tables that lower for patient access and then raise for the physician do exist, but very few medical practices actually have them.

Fortunately, most exam rooms have chairs in them. The only problem is that my upright rollator is quite large, and often, it takes up the only vacant space in the exam room, leaving no room for the doctor or nurse to work. I’m often told by the nurse that they need to move it outside of the exam room but can’t leave it in the narrow hallway because that would be a fire hazard. When they say this, I always wonder what I’d do without my assistive device if there were a fire and I couldn’t get out by myself, and I was left by myself in an exam room with the door closed.

They say they will bring it back when the exam is over. I cannot tell you how many times, even after I remind the doctor that I need it, the doctor leaves quickly and no one returns with my rollator. It is not safe for me to try to go searching for it on my own.

So I am left there, waiting until someone eventually comes, usually when a medical assistant arrives with the next patient. Then there is a sudden rush to locate my rollator and return it to me so the room can be turned over. Often this happens 20 minutes or more after the doctor, who always promises to let someone know, has already left.

More than once, I have resorted to calling out just to get someone’s attention, so I do not have to wait indefinitely. It is embarrassing, but honestly, they are the ones who should be embarrassed.

I want to be clear, I’m not here to shame doctor’s offices or their medical staff. Many staff haven’t been trained to realize that separating a disabled person from their assistive device is simply not an acceptable practice.

Some offices have a larger exam room for power wheelchair users or for patients who are much larger than a typical patient, but these rooms aren’t always available because of the variety of disabled patients who need to use it.

I understand that medical offices must serve patients with many different types of disabilities, and I do not expect them to anticipate every possible need. But some accommodations should not be considered unusual or optional. Patients who use rollators or wheelchairs are among the most common mobility-impaired visitors to any medical practice, so spaces that can safely accommodate them should be standard.

Features such as doors that are easy to open, front desks that are not so high that a shorter person or wheelchair user cannot see the receptionist, and exam rooms large enough to maneuver with a wheelchair or rollator are not extraordinary requests. They are basic elements of accessible healthcare.

Doctors’ offices do not intentionally set out to be inaccessible. Accessibility gaps are usually not about intent; they arise from not seeing the space from the perspective of a patient who cannot even open the door. No one may be trying to exclude disabled patients, but good intentions do not erase real barriers or their impact.

Seeing a doctor is stressful enough. For someone with a disability, there is something quietly discouraging about pulling into the parking lot and immediately wondering, “Can I even get inside?”

From that moment on, every step requires calculation. Will I find a parking spot close enough to walk from? Is the ramp actually usable, or too steep or tight for my rollator to navigate? Will I be able to open the door without help?

Once you’re inside, there is the stress of wondering, will I be able to sign-in at the desk? Where will I be able to fit in the waiting room with my assistive device? Will I be able to get on their scale when they take my weight? Will I be left behind by a medical assistant rushing to the exam room, when I just can’t walk that fast? Will I even fit into the exam room with my rollator?

What assumptions are being made about me just because of how I walk? If I bring someone with me, will the doctor talk to her instead of me, as if I am unable to understand or speak for myself? (Don’t worry — I always set them straight.) Will I be treated as a capable, intelligent adult? Will I be treated with dignity?

Will my medical concerns be taken seriously, or will I hear that familiar line, “This is probably just part of your disability progressing,” without any effort to investigate the real cause? Will my physical limitations lead the doctor to assume I am not willing or able to do the hard work required to recover from a separate condition? Will certain treatments or options simply not be offered to me because I am less mobile? Will I be seen as a “poor dear” whose quality of life is not worth the effort or assumed to matter less?

All of these questions would make anyone’s head’s spin. The stress of a doctor’s visit is so intensified for a disabled patient.

And if you happen to be a medically complex patient, you have the added worry that the doctor will only look at one small part of your complex medical issues, and never look at you as whole person with multiple medical needs.

Some of these barriers are physical, like the heavy doors, the too-steep ramp, or the cramped exam rooms. But there are also so many attitudinal barriers as well, such as your intelligence being discounted due to the fact you have a physical disability, decisions to move a patient’s assistive device out of reach, or failing to offer newer treatments because your life is assumed to be limited anyway.

People with disabilities already know the world was not built with us in mind. Realizing that the very places meant to help us, medical offices, often present additional barriers to care only adds to that burden. These obstacles do not merely inconvenience us. They quietly exclude us and, at times, openly diminish us. No one should feel shut out of medical care simply because their mobility looks different.

I am not sharing this because I enjoy complaining or want special treatment. I am sharing it to offer a small glimpse into what it can be like to seek medical care as a person with a mobility difference.

I don’t for one second believe that medical offices don’t want to be accessible. Many practices do not own their buildings and may have little control over the parking lot, ramps, or curb cuts. Still, accessibility laws exist for a reason. Property owners can be required to make needed improvements if a tenant insists on them. Practices also make decisions about where they lease space, and they can choose not to occupy buildings that fail to meet basic accessibility requirements. Occupying a space that doesn’t meet basic accessibility standards is ultimately a decision.

Most of the improvements needed to make doctors’ offices more accessible are not expensive. Many do not require major renovations. Small changes can make a meaningful difference.

Installing automatic door openers or adjusting door pressure, leaving intentional open spaces in waiting areas instead of filling every gap with chairs or displays, ensuring there is at least one flat, accessible unloading area near entrances, and training staff to recognize barriers and offer appropriate assistance are all practical steps that can dramatically improve access.

Accessibility is not about special treatment. It is about equal participation and equal access. Disability is the one minority group that anyone can join at any time. The shift from able-bodied to disabled can happen in an instant, through one accident, one illness, or one unexpected medical event.

Accessibility is not about convenience. It’s about dignity, safety, and the basic ability to participate in our own healthcare. When medical offices remove barriers, they are not offering special treatment. They are simply making it possible for patients to be patients. No one should have to fight their way into a doctor’s office before they can even ask for help. No one should ever have to say, “I needed help, but I couldn’t even get in the door.”

Accessibility Is a Leadership Decision

Accessibility Does Not Mean Everything for Everyone

Accessibility does not require that every space be usable by every person with every possible disability, nor has that ever been the standard. Absolute accessibility is neither realistic nor necessary. The relevant question for leaders is not whether perfection is possible, but whether reasonable and foreseeable barriers are being left in place without justification.

A rock-climbing wall, for example, cannot be made accessible to a person without upper or lower limb function without ceasing to be a climbing wall. These are legitimate limits and acknowledging them is not discrimination. It is clarity.

This image is titled the "Cycle of Exclusion & Invisibility." It shows a four-part cycle. First, the disabled people are unable to participate due to lack of accessibility. Second, disable people are not visible at events (because they cannot access them.) Third, people assume disabled people do not want to participate (since they never seem them there.) Fourth, people believe there is no need to consider disbled people or to provide accessibiity (since they never see them at events) and this returns to the original part of the cycle, that disabled people are unable to participate due to a lack of accessibility.

Most public spaces and civic functions, however, do not fall into this category. Meeting rooms, polling places, sidewalks, libraries, schools, parks, public hearings, and community events lose nothing by being designed or renovated to be accessible. In these settings, barriers such as stairs without ramps, hallways being used for storage that makes them inaccessible for mobility-impaired people, meetings without captions or interpreters, inaccessible seating, or restrooms that cannot be utilized by wheelchair users do not serve the function of the space at all. They simply exclude people.

The False Dilemma of “You Can’t Include Everyone”

When leaders argue that “you cannot include everyone,” they often confuse real limitations with design choices that could easily be changed. This framing creates a false dilemma that justifies inaction. The appropriate standard is inclusion wherever access does not interfere with the intended function of the space, and exclusion only where that function would be fundamentally altered.

Doing nothing about accessibility is still a decision about who gets to participate. It is a policy decision that prioritizes convenience, tradition, or cost over participation. Effective leadership treats accessibility as infrastructure rather than accommodation, assumes disabled people will be present, and removes barriers that exist only because no one in authority bothered to question them.

The Problem with “Accessibility Reactions”

But another way of not planning for accessibility is by doing “accessibility reactions.” Accessibility reactions are when new or modified accessibility is determined only by requests from a single family seeking a modification for one specific disabled child, family member, or small, yet vocal advocacy group. Leaders and front-end staff should of course respond with care and urgency when a need is raised, but the request should also trigger a broader question: is this an isolated situation, or is it a visible symptom of a larger access gap that affects many disabled people?

If accessibility is handled only through one-off requests, communities risk investing time and money in highly specialized solutions that serve one person while leaving larger, more basic barriers untouched. That approach can create the appearance of inclusion while continuing to exclude a far greater number of people from essential services, public participation, and civic life.

Baseline Access Must Come First

A better approach is to look for baseline access barriers first and then layering individualized accommodations on top of that foundation when needed. For example, a city might install a wheelchair-accessible swing at one park to meet the needs of a child who uses a heavy electric wheelchair. That may be a meaningful improvement for that family, but it does not address the larger question of whether wheelchair users can access the pavilions at any of the parks, whether there is usable seating throughout the space, or whether restrooms and pathways are truly accessible.

Similarly, holding a major public meeting in a venue where the only seating is bleachers sends a clear message about who is expected to attend. Even if staff are willing to “make adjustments” on request, the default setup already excludes wheelchair users and others who cannot use bleachers. If leaders want participation, access cannot be optional, improvised, or dependent on individuals having to ask for what should have been anticipated.

When Easy Fixes Replace Real Solutions

Too often, community leaders are willing to address accessibility issues that are easy, visible, and politically safe, while avoiding harder, more systemic barriers that require coordination, enforcement, or internal conflict. Installing a ramp in a location where there is ample space and minimal pushback may be straightforward.

Addressing the fact that on-street parallel parking is the only parking available, making access impossible for wheelchair users, is not. Enforcing laws against residents who block sidewalks with parked cars is not. When people park across sidewalks so they can fit more vehicles into their driveways, they block access not only for wheelchair users, but also for people using rollators, parents with strollers, and others with mobility needs.

Yet these violations are often ignored because enforcing them would require police departments, public works, and local leadership to prioritize accessibility over convenience. When a police chief dismisses parking enforcement by claiming there are more important things to do, the result is predictable. Disabled people are the ones who lose access to essential meetings, services, and civic life.

Internal power struggles and departmental avoidance may be invisible to the public, but their impact is not. When leaders fail to resolve these conflicts, accessibility becomes optional, and people with disabilities pay the price.

When Accessibility Exists Only on Paper

Another critical and often overlooked area is code enforcement. Many communities are diligent about regulating visible, easily measured requirements such as the number of designated accessible parking spaces in shopping centers, which are typically calculated by square footage and routinely inspected. These requirements are clear, familiar, and relatively easy to enforce.

Accessibility inside buildings, however, is far less consistently monitored. Small stores and boutiques often fill their spaces with merchandise to the point that aisles are too narrow for a wheelchair user, a person using a rollator, or someone with mobility limitations to even enter the store, let alone shop independently. Beauty shops and nail salons, particularly those that are independently owned rather than national chains, frequently create similar barriers. In an effort to maximize revenue, they install too many service stations or crowd their floors with product displays, leaving insufficient space for disabled customers to navigate safely or reach services. These barriers are rarely checked proactively. At best, they are addressed only after a complaint is filed, and even then, follow-up is inconsistent or incomplete.

The same pattern appears in restaurants and public buildings where accessible restrooms technically exist, but hallways leading to them are blocked by boxes, stacked chairs, or stored equipment. When access routes are obstructed, the presence of an accessible restroom becomes meaningless. In many retail stores, accessible changing rooms are routinely used for storage, filled with boxes of hangers, incoming stock waiting to be put out, or outgoing trash, rendering them unavailable to the people who need them.

In larger buildings, elevators that serve both the public and janitorial staff are frequently treated as storage or transport space. Trash bins, laundry carts, bundled linens, or bags of refuse are left inside, sometimes for extended periods. When this happens, a disabled person may be completely blocked from reaching another floor, with no way to alert staff or meeting participants that access has been cut off.

Outdoor access is undermined in similar ways. The striped access areas next to designated parking spaces are often blocked by motorcycles or street-legal golf carts. This can make it impossible for a wheelchair user to deploy a ramp or safely exit their vehicle. In some cases, people return to their cars only to find they must wait until the motorcycle or golf cart owner reappears, which is especially dangerous in extreme heat, high winds, or heavy rain. Sidewalks are also frequently obstructed by bicycles or scooters chained to poles and traffic signs, blocking passage for hours at a time. When this happens, disabled people who are stopped by the obstruction often have no practical way to resolve the situation.

In each of these cases, accessibility exists on paper but not in reality. Without consistent enforcement and clear accountability, basic access can be undone by everyday operational decisions. The result is predictable. People with disabilities are excluded from spaces and services they are legally entitled to use, not because access was impossible, but because maintaining it was not treated as a priority.

Rethinking “The Greatest Good for the Greatest Number”

For community leaders, the answer to accessibility cannot be reduced to the old adage of “doing the greatest good for the greatest number,” because that logic breaks down the moment disability is involved. If left unchallenged, it simply becomes a way to justify serving the largest non-disabled majority while treating disabled people as a secondary concern or an added expense. That is not sound leadership.

Accessibility is not about maximizing convenience for most people. It is about removing barriers that prevent entire groups from participating in shared civic life. The right question is not “who represents the largest group,” but “who is being prevented from entering, participating, or being heard at all.”

When leaders focus on removing the barriers that fully block participation, access decisions become clearer and more defensible. Designing for people who are most likely to be excluded almost always improves the experience for everyone else as well. Ramps also help parents with strollers and workers with carts. Clear signage benefits visitors and first-time attendees. Wider aisles reduce congestion and improve safety.

Accessibility works best when it is treated as a requirement for full participation, not as a favor or an exception. A community should be judged by whether people with the least power can take part without having to ask for special permission or extraordinary help.

Making Hard Choices with Limited Resources

Communities also have to acknowledge that accessibility decisions are made within real budget limits. City and county resources are not infinite, and leaders are often faced with difficult choices, such as whether to allocate funds to make one public building accessible or to direct those same funds toward improving access in a park, library, or transportation corridor.

These decisions are especially complex in historic communities, where many civic buildings were constructed long before accessibility standards existed. Stair-only entrances, inadequate or poorly placed ramps, buildings without elevators, and narrow interior layouts are common. Mixed-use neighborhoods further complicate the issue, with government offices, private homes, apartments, and businesses sharing limited on-street parking and constrained public space.

Acknowledging these constraints is necessary, but it cannot become a reason for inaction. Prioritization must be guided by impact.

Leaders should focus first on changes that open access to essential services, public decision-making, and daily civic participation for the greatest number of people. When budgets are limited, the question is not whether accessibility can be afforded everywhere at once, but whether investments are being directed where exclusion is most severe and consequences are highest.

In historic communities especially, thoughtful planning, phased improvements, and coordinated use of funds are essential to avoid preserving tradition at the expense of participation.

Accessibility as a Measure of Leadership

At its core, accessibility is a leadership decision. It reflects whose time, presence, and participation are valued enough to plan for in advance. Communities already make choices every day about where to invest, what to enforce, and which problems are considered urgent. Accessibility belongs in those decisions.

Accessibility is not achieved through good intentions or symbolic gestures. It is built through planning, enforcement, and follow-through. Communities that treat access as optional, reactive, or secondary inevitably create systems that work only for those already able to navigate them.

Communities that plan for access make a different choice. They recognize that participation in civic life is not a privilege reserved for those who can climb stairs, fit into narrow aisles, or advocate loudly for themselves. It is a shared responsibility. Leadership is not defined by how well a community preserves convenience or tradition, but by whether it makes room for people who have too often been pushed aside or left unheard.

Why Disabled People Are Still Shut Out of Leadership – Jan Mariet’s A Day in the Life

Living Life Without Explanations

Healing from Trauma and Reclaiming Boundaries

When you come from a world shaped by trauma, you learn to explain and justify everything so others don’t misunderstand you or get upset with you. You are always bracing for the explosion of anger, dismay, or indignation. You assume their response might be to tear you down, no matter how carefully you choose your words or how hard you try to do everything “right.”

This is the reality of some forms of trauma. You are kept off balance because you never know whether you will be appreciated, dismissed, or attacked. That instability is often intentional on the part of those who traumatized you, even if they will never admit it.

As you heal, you begin to understand that you only need to explain yourself when you choose to. You learn that how others perceive your truth is up to them. And if there is misunderstanding, the people meant to be in your circle will ask, not assume, not explode, and not tear you down.

So when you feel the urge to over explain, to justify ordinary actions, or to soothe ruffled feathers before they are even ruffled, pause. Notice how far you have come. Remind yourself that you don’t just need people in your life. You need the right people. The people who listen. The people who respect you. The right people.

Other articles by Jan Mariet that you might enjoy:

When Change Sneaks Up on You – Jan Mariet’s A Day in the Life

A Small Tablecloth from France – Jan Mariet’s A Day in the Life

Why We Stay Silent – Jan Mariet’s A Day in the Life

Why Disabled People Are Still Shut Out of Leadership

If you think ableism is just about rude comments or outdated language, you couldn’t be further from the truth. It runs far deeper than that. Ableism is structural. It is embedded in how our communities are designed and who is allowed to shape them.

You can see this most clearly when disabled people are shut out of leadership and decision-making roles—by the very glass ceilings and systemic inaccessibility that prevent us from rising into those positions in the first place. Yes, disabled people are sometimes “included,” but too often only as symbolic representation, limited to one narrow or convenient form of disability access.

These are not accidents. They are the predictable outcomes of excluding disabled people from authority and leadership.

This is what happens when disabled people are pushed to the margins instead of trusted as experts in our own lives. And it shows up everywhere.

No accessible entrances.
Accessible bathrooms used as storage for boxes and supplies.
Baby-changing tables mounted so high a wheelchair user couldn’t possibly reach them.
Inaccessible public meetings.
Housing policies built around a mythical “one size fits all.”
Services optimized for cost savings instead of human impact.
“Alzheimer’s” jokes tossed around casually.
Public meetings held without sign-language interpreters.
Schools without adapted facilities.
The R-word still being used as a punchline.

And the list goes on.

Ableism is so ingrained in our society that many people don’t even see it anymore. It’s normalized, excused, and minimized. Most people aren’t even aware they’re being ableist until someone points it out, often after harm has already occurred.

Representation cannot be merely symbolic. It is too important for that. Current statistics estimate that one in ten people has a disability. So why aren’t one in ten politicians disabled? Why aren’t one in ten CEOs disabled? If one in ten people has a disability, why are so few leaders disabled?

And while there is no single, universally agreed-upon statistic for daily wheelchair use in the U.S., multiple sources estimate that approximately one in forty people use a wheelchair as their primary mobility device. When was the last time you saw a top politician or community leader who was a daily wheelchair user? What about community planners, landscape designers, or architectural designers?

If one in approximately 40 people are wheelchair users, why isn’t a single member of the House of Representatives a daily wheelchair user? Why is only one member of the Senate an occasional wheelchair user? There are 535 voting members of Congress, and yet, only one is a wheelchair user.

If Congress reflected the general U.S. population, you would expect about 13–14 daily wheelchair users among its members. In reality, there is only one wheelchair user.

Obviously, some professions have essential physical requirements that naturally exclude wheelchair users. You would not expect to find NFL players who are daily wheelchair users, nor active-duty firefighters, combat soldiers, roofers, or commercial airline pilots.

These are roles in which the core physical functions of the job genuinely cannot be performed from a wheelchair. This is not discrimination; it is reality. It would be no more reasonable than expecting a deaf and non-speaking person to be an opera singer, or a person missing both upper and lower limbs to be a rock climber.

There are, in fact, a small number of professions where essential physical requirements naturally exclude wheelchair users or people with other disabilities, but they are the exception, not the rule. Yet these few examples are routinely used to justify exclusion everywhere else.

When we talk about the absence of people with disabilities, community and political leadership do not fall into that category. Our leaders come from a wide range of backgrounds, professions, communities, and educational paths. These roles are not defined by physical endurance, speed, or mobility, but by judgment, experience, and the ability to serve

The absence of disabled leaders isn’t accidental. Leadership in the U.S. has long been built around an able-bodied ideal, and when disability appears, it’s either hidden, reframed, or erased.

When disabled people are in leadership, systems shift. Barriers are anticipated instead of apologized for later. Access is built in, not patched on afterward. Exclusion is prevented, not explained away.

Nothing changes unless we, disabled people and those who support full accessibility, use our voices. Real change does not come from isolated stories spoken into the social-media void. It comes from collective pressure, shared advocacy, and disabled people showing up together where decisions are actually made — if we can get through the door, up the steps, or find accessible seating.

Reimagining Accessibility: Undoing Ableism Among Disabled and Medical Communities – Jan Mariet’s A Day in the Life

My Mother, Myself

My mother, myself,
Two sides of a mirror,
When the glass is dim
And cloudy.

Stained in a few places,
A scratch here or there,
There is no doubt
We are alike in so many ways
And yet, we always
Moved in different directions.

I recall the similarities
And the differences
As if they were items on a shopping list
I left home on the counter
Even though I knew it well.

Same disability,
Both treated differently.
One in the 1930s and the other
In the 1960s.
So differently, but still
Barbaric by any modern definition.

Cloaked in trauma
That ruled our adult lives
While we were both so clueless
About how it affected us.

We were both told stories
About ourselves that hid the truth.

You, the child of a disabled father
Who was denied an education
That was considered a waste
Of time and resources
In a world that once 
Considered a handicap
A moral failing.

Me, the child of a disabled mother
Who never allowed that word to cross
Her lips or be said in any conversation
And who overcame every obstacle.

Also me, the child who never understood
How dangerous the word ‘handicapped’ 
Used to be back when
Handicapped children had no legal right
To a public education.

You taught me to say, I’m not 
Handicapped.
There was a little problem with my legs 
When I was born, and I had surgery
To fix it, and it left me a little bit lame. 

Just as you were taught to say you weren’t
Either.
You were simply dropped
Down a flight of concrete stairs
By an elderly aunt
And that injury led to your issues.

You grew up believing your story
As much as I grew up believing mine
Until the facts that had been concealed
So long ago, could no longer
Be hidden.

Until the photos, the records, the 
Whispered stories among relatives,
Could no longer be denied.

You spent your life 
Saying only what needed to be said, 
Keeping silent 
Or spinning a story that made things
Less dangerous, less ominous
Until neither of us could tell
The truth from the story.
You chose the reality
You could bear.

I spent my life
Saying everything 
That came into my mind
Oversharing with anyone who’d listen
Or spinning an ever-changing story that made things
Happier, calmer, or in some way richer,
Until I became lost in it
As well.
I chose the reality
I could bear, too.

My mother, myself,
Two sides of a mirror,
We became the flip side
Of each other.
Forever imitating one another
But always moving to 
The opposite side.

Only able to touch
Through the cold, shivery
Smoothness
That kept us eternally moving
The other way.

by Jan Mariet               02/01/2025

How People Disappear

I’m right here. You may not notice me anymore, but I am still here.

You may think my smile means something. You may believe me when I say, “I’m fine,” because you want to believe me — and then move on.

What else am I supposed to say? When your body repeatedly falls apart, and there is nothing left to try to stop it, are you going to announce, “I’m desperately ill… again”?

I’ve learned that my reality makes people uncomfortable, because eventually, even compassion has a limit. But it’s still my reality.

My reality is more than you want to know, or maybe more than you can handle knowing. But either way, I’m still here, handling it, because what other choice do I have?

Planning feels pointless when every plan dissolves before my eyes. It’s hard to take action when your body repeatedly, relentlessly lets you down; when illness and medical urgency demand to be heard above all else.

I hold back even on the things I genuinely want to do, not because I don’t care, not because I don’t have desires, but because caring has become exhausting, and hoping has a cost I can no longer pay.

I’ve stopped imagining the future, not because I don’t care, not because I don’t want one, but because I no longer know where I fit inside it. Every time I imagine a life ahead, it crumbles before my eyes, and no amount of work or effort changes that reality.

Hope becomes dangerous. Planning becomes cruel. When every plan is eventually taken from you, what is the point of hoping?

The dreams I held, and still hold, don’t disappear, I just quietly let them go as quickly as they appear. My hand can’t hold the string tight enough, and I watch them, like balloons, disappear into the sky.

They linger as reminders that I am no longer fully living, and yet, I am not dead yet, either. I’m living in the ether of illness. I am slowly becoming a memory; someone old friends check in on once in a while before scurrying on with their real lives, that no longer include me.

Empathy becomes cruel when it is the only pattern left in your life. Sympathy is even crueler.

When your choices are ‘hope and constant disappointment’ or
‘planning for something that will be taken from you and leave you emptier than before’, what do you choose? After a while, you stop choosing at all.

Do you sit and watch the world go by? Do you keep talking about the illnesses that quietly steal your life away? Or do you try to converse, carefully, briefly, until even that becomes too much for others to carry?

After a while, conversation seems useless, too. You stop contacting anyone, and you imagine their great relief. And in many ways, your voice starts to embrace the silence. It’s just easier.

So, I read. I think. I write about things that seem important to fill the minutes and hours that I exist. I tell myself these things matter. And I try to believe it.

Then, even that becomes hollow, because I know, so well, that words are not actions, and the actions are beyond what I can do. Naively, I thought maybe my words would enough, but slowly, relentlessly, I have realized that is not true – at least not for me.

How desperately I want it to be true, how desperately I wanted my written words to become my voice, but desperation does not change reality. Words unread are nothing at all. Words just become something to fill the relentless time that each day takes.

That is the rhythm of my life now. I am a songbird that no longer has a voice. I am an eagle that can no longer soar. I am the broken-down old horse that grazes on a barren field, trudges to a cold stall at night, and searches for a slice of apple in the empty pockets of faceless people I no longer know.

This is nothing like living. I have lived and I remember what it feels like. I remember having a small spark that lit one person’s way. The spark is gone, the way has gone dark, and this is nothing like living.

I am the old dog who waits by the door for an owner that has passed away, and I have no idea – only long, empty, faithful days of waiting for a joyful reunion that will never come.

I’m right here. You may not notice me anymore, but I am still here. Please, someone notice me.

02/01/2025

Navigating Care as a Medically Complex Patient

What Care Exists for Medically Complex Patients, What’s Missing, and Why It Matters

A patient is at the elevator in a medical building seeing the long lists of medical specialists in the building and trying to remember which doctor she is supposed to be seeing today.

Living with multiple interacting conditions means navigating trade-offs, dealing with fragmented care, and finding your way through systems not designed for medical complexity. This article explores what support actually exists for medically complex patients, where care breaks down, and why coordination and integration of care matters.

What Does It Mean to Be Medically Complex?

A person is often described as medically complex when they live with multiple chronic or serious conditions that interact with one another. These conditions are not neatly separated. They affect different body systems, require different specialists, and often demand treatments that overlap or conflict. Care becomes less about fixing a single problem and more about managing trade-offs.

For medically complex patients, care often requires choosing a priority condition. This is not because other conditions matter less, but because treating everything at once can do more harm than good. Multiple medications can interact, side effects can accumulate, and energy, resilience, and recovery time are limited resources.

Sometimes the choice is between partial relief and total exhaustion. Other times, it is between managing pain and protecting organ function or deciding whether a treatment will make life more livable or simply increase appointments, medications, and side effects. These are not choices patients should have to make alone, yet they often are.

When Specialty Care Misses the Bigger Picture

Specialists are experts in their fields, and that expertise matters. Problems arise when care stops at the boundaries of that specialty. Many specialists focus narrowly on the condition they are trained to treat, without fully accounting for the other conditions a patient lives with. Treatments are prescribed in isolation, as if the body functioned in departments rather than as an integrated whole.

When a treatment improves one condition but worsens another, the patient is left managing the consequences. The specialist may see success, while the patient lives with side effects and a reduced quality of life.

The Illusion of “Coordinated Care”

Specialists often say they will “coordinate care” with the referring physician. For medically complex patients, that phrase sounds reassuring, but it rarely reflects reality.

In most cases, the referring physician is the patient’s primary care provider, not the many other specialists actively involved in treatment. A medically complex patient may be seeing a rheumatologist, nephrologist, gastroenterologist, dermatologist, hematologist, and internal medicine specialist at the same time. These providers are not routinely communicating with one another in meaningful ways.

When a specialist says they will “keep your other doctors in the loop,” what this usually means is that visit notes or test results will be electronically transmitted to one or two providers listed in the system. These records are often received by support staff, uploaded into the chart, and marked as completed. They may never be reviewed in real time by the other treating physicians. Even when they are reviewed, they are rarely discussed across specialties in a way that considers how one treatment plan may affect another condition.

The Burden Placed on Primary Care Providers

As a result, primary care providers are often left attempting to coordinate complex, overlapping care without the time, access, or support required to do so effectively. The average primary care physician can see a patient only every six to eight weeks, sometimes longer. For a medically complex patient, that span of time is significant. Medically complex patients often need to be seen by their PCP on a more regular basis, especially when conditions flare, or when side effects from one treatment make other conditions worse.

During those weeks of waiting to see their PCP, medications may be started, stopped, or adjusted by multiple specialists. Side effects can add up, conditions can flare, and the patient’s health can decline substantially before the next primary care appointment is even available.

This is not a failure of individual physicians, it is a structural problem. The system is not designed to support the level of communication and responsiveness medically complex patients require. What results is care that forces patients and primary care providers to bridge gaps that should not exist in the first place.

What Is a Critical Care Manager?

A Critical Care Manager is a healthcare professional who helps coordinate care for patients with serious, complex, or high-risk medical needs. The role exists to bridge gaps between providers, treatments, and systems when a patient’s care has become too complicated to manage through routine appointments alone.

Despite the name, a Critical Care Manager does not work only in intensive care units, and the role is not limited to end-of-life care. In outpatient and chronic illness settings, Critical Care Management refers to coordination-based care for medically complex patients. It is often provided by a nurse, nurse case manager, social worker, or care coordination specialist working within a medical practice, hospital system, or insurance plan.

The core purpose of a Critical Care Manager is coordination, not making specific diagnoses.

What Does a Critical Care Manager Actually Do?

A Critical Care Manager focuses on the full scope of a patient’s health. This may include coordinating communication among multiple specialists, reviewing medications for interactions or conflicting goals, tracking changes across conditions, helping prioritize treatment when everything cannot be treated simultaneously, identifying red flags early, assisting with referrals and authorizations, and helping patients understand how different treatments interact.

For medically complex patients, a Critical Care Manager may be the only professional who consistently sees the entire care landscape at once.

How Medically Complex Patients Qualify for Critical Care Management

Eligibility varies by healthcare system and insurer, but patients typically qualify when they meet several criteria, such as having multiple serious chronic conditions affecting different body systems, conditions that conflict in treatment, frequent specialist involvement, a high medication burden, functional decline, or elevated risk for complications without close monitoring.

Medical complexity is defined by the interaction of multiple conditions, not just by the number of diagnoses a person has. A patient whose conditions must be balanced against one another is often more complex than someone with many conditions treated independently.

Many patients who qualify for Critical Care Management never receive it simply because it is not offered or explained, and they don’t know to ask. There are eligible patients who have no idea the service exists, despite evidence that effective care coordination reduces emergency visits and extended hospitalizations. This benefits both patients and insurers, yet access remains limited.

How Critical Care Management Differs from Typical Primary Care

Primary care physicians are essential, but the structure of primary care limits what can realistically be provided to medically complex patients.

Typical primary care involves brief scheduled visits, a focus on immediate concerns, limited coordination time, reliance on specialist notes, and long intervals between appointments. Primary care providers are not set up to coordinate complex care. They simply do not have the infrastructure to follow up with a plethora of specialists, track medications from multiple doctors, determine possible drug interactions, and take urgent calls or texts from a medically complex patient when they are in crisis or need immediate assistance.

Critical Care Management-supported care offers ongoing oversight, active monitoring between visits, intentional cross-specialty communication, early intervention when problems emerge, and a designated professional responsible for coordination.

The difference between primary care and critical care is not skill or commitment, it is timing and infrastructure.

Why Critical Care Management Matters

For medically complex patients, the greatest risk is not a single diagnosis, it is fragmented care. When treatments are prescribed independently, the patient becomes the coordinator by default. The patient may have a thorough understanding of his or her diagnoses, but this still doesn’t make the patient a medical doctor. When patients have to coordinate their own care, it becomes unsafe and eventually unsustainable.

Critical Care Management fills a gap between specialties and competing diagnoses. When done well, it reduces medical crises, prevents harmful treatment conflicts, and supports decisions that prioritize overall stability rather than treating one condition or set of symptoms at a time.

Critical Care Management vs. Chronic Care Management

One of the most confusing aspects of complex care is overlapping terminology. Critical Care Management and Chronic Care Management are often abbreviated the same way, but they are not the same thing.

Chronic Care Management

Chronic Care Management is a Medicare and insurance billing program designed for patients with two or more long-term conditions. It typically involves documented care plans, periodic check-ins, medication lists, and minimum time requirements for billing.

These services are often administrative and may be handled by office staff or third-party vendors. Chronic Care Management can be helpful for stable patients with predictable needs. It is not designed for patients whose conditions interact or change rapidly.

Critical Care Management

Critical Care Management is a care model, not simply a billing category. It focuses on real-time coordination, prioritization, and risk management. It recognizes that medically complex patients cannot safely wait weeks between appointments while conditions evolve.

Why the Difference Matters

Many patients are told they are “already receiving CCM” when what they are receiving is Chronic Care Management. That reassurance often collapses when real coordination is needed.

Basic documentation does not prevent medication conflicts. A monthly check-in does not catch a cascading medical decline. Shared records do not necessarily equal collaboration.

What Is Physiatry?

Physiatry, also known as Physical Medicine and Rehabilitation, is a medical specialty focused on improving function, quality of life, and overall stability for people with injuries, chronic illnesses, disabilities, and complex medical conditions.

Physiatry looks at how multiple conditions interact and how they affect daily life. The goal is to help the patient live a good, productive life rather than a cure at all costs. Improving a quality of life for those who are medically complex is the goal of physiatry.

What Is a Physiatrist?

A physiatrist is a medical doctor who specializes in physiatry. Physiatrists are medical doctors who are fully trained in disease processes, medications, and medical risk, but whose clinical focus is on integration rather than treating conditions in isolation.

Physiatrists commonly work with patients whose care does not fit neatly into a single specialty.

Why Physiatrists Matter for Medically Complex Patients

For medically complex patients, the central question is often not Can this be treated? but Should it be treated now, and at what cost?

Physiatrists are trained to engage with that question directly. They understand that stability, function, and living a “good” life are legitimate clinical priorities.

Why Most Patients Are Never Told Physiatry Exists

Physiatry is frequently underutilized because it does not align with diagnosis-driven referral pathways that insurance companies use. It does not “own” a single disease. As a result, patients are often referred only after injury or crisis, rather than earlier when coordination could prevent decline.

Insurance Coverage and Access Barriers for Physiatry

Physiatry is generally covered by insurance, including Medicare, but long-term physiatric care is often difficult to maintain. Insurance coverage is commonly tied to discrete events rather than ongoing complexity. There also aren’t many physiatrists and they are unevenly distributed throughout the United States, making access difficult even when coverage exists.

A specialist may consider a treatment successful, even when the patient is left coping with significant side effects and a lower quality of life. What looks like success on a chart can feel like loss to the patient who must live with the side effects.

Medically Complex Patients Deserve Both Coordination and Ongoing Follow-up

Medically complex patients are often labeled as difficult or noncompliant, when the real issue is a system not designed to manage layered, interrelated conditions. Effective care requires coordination and ongoing follow-up.

What Medically Complex Patients Can Ask For

Patients can ask who is coordinating their care, how treatments interact, whether someone is viewing the whole picture, and whether physiatry or care coordination might help.

Advocacy does not mean demanding perfection. It means asking for care that acknowledges reality.

A Final Reminder

Medically complex patients are experts in their lived experience. Their bodies, symptoms, and limits cannot be reduced to isolated diagnoses or single appointments. Care delivered in pieces will always fall short for patients whose lives are shaped by overlapping conditions.

Complex care requires coordination, communication, and ongoing follow-up. It requires systems that recognize continuity as essential rather than an optional component. When responsibility for integration is placed on the patient instead of the system, the gaps in care that occur become predictable as well as harmful.

Listening to medically complex patients is not a courtesy, it is a clinical necessity. Until care models reflect that truth, patients will continue to shoulder the burden of navigating systems that were never designed for complexity in the first place.

Here are some more articles by Jan Mariet that you might enjoy reading.

Why Our Healthcare System Often Fails the People Who Need It Most – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Do you have a comment or question? Feel free to let me know below.

What “Four Hours of Activity” Really Means for a Chronically Ill Person

Chronic Illness and Work

People love to talk about whether chronically ill people can work. You will hear people say, “If you can get out of bed and sit in a chair for four hours, you should be able to work half time.” The implication is clear. If they wanted to work, they would get themselves up and do it.

So many chronically ill people wish it worked that way. They ask themselves over and over, Can I hold a job? Can I show up and be reliable? Can I be productive for a few hours each day?

Why Four Hours of Activity Is Not the Same as Four Hours of Work

But here is the question that almost never gets asked. What if you can work, but working takes everything you have? What if your chronic illness does not stop you from earning a paycheck, but it does destroy your ability to have a life outside of work? What if it leaves you without the strength to do your laundry, cook your meals, clean up after yourself, shower, or wash your hair? How can a person survive long term when their most basic needs are not being met? This is the part people gloss over.

When a medical provider determines that a chronically ill person can be “active for four hours per day,” those hours are often imagined as clean, uninterrupted blocks of productive time. People picture sitting, typing, standing, teaching, or attending a meeting. What they do not picture is everything that has to happen before and after just to exist as a human being. Being able to be active for four hours is not the same thing as being able to work for four hours.

For someone with a chronic illness, thirty minutes of work may need to be followed by hours of rest just to continue functioning. When their body is pushed beyond its limits, exhaustion is the result. Without adequate rest after exertion, that exhaustion can turn into a flare that leaves them bedridden or homebound for days or even weeks.

The Hidden Energy Cost of Basic Living

Then there are the everyday tasks of basic self-care, which are often dismissed by non-ill people as “non-activities.” For many chronically ill people, these tasks are not only work, but they are also exhausting work.

Laundry is a good example. For a single adult with no spouse and no children, doing one week of laundry sounds simple. Gather clothes, start the washer, move them to the dryer, fold, put away. For someone without physical limitations, that might add up to forty or fifty minutes of active time, spread across a couple of hours.

For someone with a chronic illness, that same laundry often requires pacing. Standing too long hurts. Lifting wet clothes strains joints or a spine. Folding may have to be done seated, with breaks. What once took under an hour can now take an hour and a half, sometimes spread across an entire day or multiple days. And afterward, there may be nothing left.

Grocery shopping is another task people underestimate. Making a list, driving to the store, walking the aisles, standing in line, loading bags, unloading at home. For many people, that takes an hour to an hour and a half.

For someone with pain, fatigue, dizziness, sensory overload, or limited stamina, it can easily take two or three hours. That does not include the recovery time afterward. Online ordering avoids walking, but it still requires planning, decision-making, unpacking, and putting everything away. It also costs more, which many people who are unable to work simply cannot afford.

Cooking is not just “making dinner.” It involves deciding what to eat, standing to prep food, chopping, lifting pans, and monitoring heat. For someone without limitations, that might take forty-five minutes. For someone who cannot stand for long periods or who experiences brain fog or tremors, it can take twice as long and often has to be broken into stages with rest in between.

Then there are the dishes. It might take ten minutes for one person. But it may take twenty or thirty minutes for another, especially if standing hurts or hands fatigue easily. If dishes are postponed because there is no energy left, the task only becomes more overwhelming later.

Even hygiene tasks are not minor. A shower that takes ten minutes for one person can take thirty or forty-five minutes for someone else once balance issues, heat intolerance, fatigue, and recovery time are factored in. For some chronically people, showering is the only major task they can manage in a day.

Brushing teeth is not always a two-minute job. Getting dressed is not always a five-minute job. Compression garments, braces, orthotics, pain with bending, the need to sit while dressing, or the use of dressing aids can easily turn these tasks into twenty- or thirty-minute efforts.

Packing a lunch sounds trivial until dietary restrictions, limited hand strength, and the mental energy required to plan ahead are considered. Every decision has an energy cost.

None of these tasks are optional. They are not hobbies. They are not leisure. They are basic survival.

And then there is the part that often goes completely uncounted: getting to work and getting home. A commute is not just time spent in a car or on public transportation. It requires sustained attention, physical positioning, sensory processing, and stress management. For someone without limitations, a fifteen- or thirty-minute commute each way is an inconvenience. For someone with chronic pain, neurological symptoms, fatigue, or mobility issues, it can be a significant drain before the workday even begins.

Getting to work may involve stairs, parking lots, elevators, crowded buses, or long hallways. It may require standing, balancing, or sitting in positions that worsen pain. It often means managing symptoms quietly while trying to arrive looking “fine.”

A fifteen-minute commute in each direction quickly becomes thirty minutes of energy expenditure. A thirty-minute commute becomes an hour. By the time a chronically ill person arrives at work, a large portion of their daily capacity may already be gone. When the workday ends, getting home is not a relief. It is another demand. Another stretch of sustained effort.

That return trip often uses the last usable energy of the day. Whatever is waiting at home: laundry, food, dishes, personal care, now has to be done with whatever remains, if anything remains at all.

Why Chronic Illness Makes Consistent Work So Difficult

And this assumes something else that is rarely true for people with chronica illness: predictability. People with chronic illnesses are chronically ill. Their capacity is not stable. One day, they may not be able to get out of bed at all. The next day, they may be able to be active for an hour or two. Later in the week, they might have a rare, good day and manage five or six hours of activity.

Employment does not work that way. Most jobs require consistency. They require reliability. They require a predictable schedule. There are very few part-time jobs where someone can show up only on the days they feel well enough and stay home without consequence on the days they do not.

For many chronically ill people, the issue is not willingness or motivation. It is that the nature of their illness makes them unreliable by design.

There is another reality that is rarely acknowledged. Many chronically ill people require accommodations in order to work safely. They may need specialized equipment, adaptive technology, a modified workspace, or a physically accessible environment. They may not be able to climb stairs, stand for extended periods, walk long distances, or safely navigate workplaces without ramps, elevators, supportive seating, or ergonomic workstations. These needs are not preferences. They are requirements.

Yet when chronically ill people apply for jobs, employers are often wary. Even when accommodations are legally required, it is easier to hire someone without additional needs. The presence of accommodations can quietly move a qualified candidate to the bottom of the list.

Pain, Medication, and Employability

Pain adds another layer. Many chronically ill people live with daily pain and require prescribed pain medication to function. These medications are legal and medically necessary, but they can cause grogginess, dizziness, slowed reaction time, or unsteadiness. Even when taken exactly as prescribed, they can make someone appear less alert or less energetic.

This does not make someone incapable. But in a hiring system that values speed, stamina, and appearance over accommodation and understanding, it often makes them the least hireable person in the room.

As a result, chronically ill people, even those who are highly educated, skilled, and experienced, are often pushed toward the least desirable jobs, if they are able to find work at all.

Why the Math Doesn’t Work

When all of this is added together, something becomes very clear. If someone has four hours of usable energy in a day, those hours are often gone before work ever begins.

They are spent getting ready, maintaining a household, feeding themselves, managing hygiene, traveling to and from work, and managing pain. You cannot show up to work unwashed, in dirty clothes, with unbrushed teeth, because you did not have the strength to care for yourself first.

The idea that those same four hours can simply be handed over to paid work ignores the reality of how chronically ill bodies and chronically ill lives function.

This is why statements like “you can work part time” or “you can manage to go to one class” are based on false assumptions. They count the visible activity and ignore the preparation, the travel, the recovery, the unpredictability, and the structural barriers. They ignore the energy budget entirely.

Able-bodied people often see the things they do easily as “non-activities.” Chronically ill people do not have that luxury. Every task must be planned, measured, and weighed against what it will cost later.

And sometimes, even when something is technically possible, it simply is not doable.

The truth is not that chronically ill people are unwilling to work. The truth is that life itself already consumes so much of their daily capacity that there is little to nothing left for anything else.

When all of the invisible labor is acknowledged, there are not four hours of activity left. Often, there are only minutes. And how many employers will hire a person for only minutes per day? They won’t, of course. And the chronically ill person will still face the negative attitudes and judgement of strangers who simply can’t understand why they won’t just “stop being lazy and get a job.”

These realities are rarely understood or accepted by able-bodied peers. Without understanding the energy cost of basic living, it is easy to assume a chronically ill person is lazy, unmotivated, or unwilling to contribute.

The reality is very different and until that reality is understood, the math will never make sense.

Here are some other articles by Jan Mariet on similar topics.

Reimagining Accessibility: Undoing Ableism Among Disabled and Medical Communities – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

Living with Invisible Losses: Finding Meaning in Chronic Illness – Jan Mariet’s A Day in the Life

Why Our Healthcare System Often Fails the People Who Need It Most

A frustrated man holding a stack of medical forms, standing in line at a medical office.

So much of our healthcare system operates on a quiet assumption: that if care is needed badly enough, patients will know what is needed and how to find it. Our system assumes people understand the process, recognize when something requires escalation, and know which doors to knock on and how hard to push.

It assumes patients can accurately identify their symptoms, organize their concerns, and clearly articulate all of it during a brief appointment, often scheduled weeks or months in advance. It assumes they will remember everything they meant to say once they are finally in the room.

It also assumes they will have a medical provider willing to listen, that they can stay focused long enough to say everything that needs to be said, and that they can respond thoughtfully to specific questions as they arise. Many of those questions require reflection or consideration of things the patient may never have been asked to think about before, yet patients are expected to answer clearly without being given adequate time to think or organize their responses.

Illness often makes these expectations unrealistic. Fatigue dulls concentration. Pain often distracts a person from focusing. Brain fog interferes with memory and language, making clear expression difficult or even impossible. Anxiety, especially in medical settings, can further impair focus and confidence, particularly within a typical 15-to-20-minute appointment. Yet the system treats clear communication as a prerequisite for care rather than a support that should be built into it.

Access to quality care should not depend on who has the energy and knowledge to navigate a process that assumes clarity, stamina, and fluency at the very moment people are most unwell.

Layered onto these expectations are the built-in barriers to our healthcare system, where adequate care is far from guaranteed. The system is fragmented. Specialists, primary care providers, insurance companies, pharmacies, and hospitals often function independently, with little coordination or communication. The burden of managing care falls on the patient, and when someone cannot fill that role, gaps in care are inevitable and critical details are lost.

There is an unspoken expectation of medical literacy. Patients are assumed to know which specialists exist, what their roles are, what tests are appropriate, when symptoms warrant escalation, and how to push back if care stalls. Without that knowledge, the care that exists on paper isn’t really accessible to those who need it.

Insurance processes add another layer of difficulty. Prior authorizations, denials, appeals, narrow networks, step therapy, and coverage limits all require persistence and familiarity with complex systems. Care may be available in theory but functionally unreachable without time, energy, articulation, and knowledge.

Time itself is a barrier. Short appointments leave little room for complexity. Long wait times favor those who can reschedule, take time off work, arrange transportation, or sit in waiting rooms for hours. Many people simply cannot do these things.

Another barrier is the availability and willingness of medical providers to appeal insurance decisions that block necessary care. For patients with limited or lower-reimbursing insurance, physicians are often paid less for visits to begin with. When insurance companies require a provider to submit or pursue an appeal in order to approve treatment or services, the time spent on that process is typically unpaid.

As a result, doctors may be unable or unwilling to devote the hours required to challenge wrongful denials, particularly when reimbursement is already low. This creates a system in which patients with certain types of insurance face greater obstacles to receiving care, not because the care is unnecessary, but because appealing for it is financially unsustainable for their medical providers.

There is also a built-in bias within our healthcare system. Some patients must work harder to be believed or taken seriously based on disability, gender, age, weight, race, medical complexity or mental health history. That extra effort requires mental stamina and persistence that many people simply do not have to give.

When access depends on being able to navigate a complex highway of systems, and on a person’s ability to self-advocate, those with the most resources are more likely to succeed. People with flexible schedules, supportive families, financial stability, higher education, or prior experience within healthcare systems often fare better. Even when low-income advocacy is available, there are usually long-wait times to gain access, and to utilize such services, a person has to know they exist in the first place.

Those who are sicker, more cognitively affected, more isolated, or more financially constrained are more likely to not receive the services and care they need, not because they are unwilling to try, but because the system demands capacities their illness has already taken away from them.

This creates a quiet but profound inequity. The people most in need of care are often the least able to obtain it. True access should not depend on endurance, fluency, or education level. It must not rely on knowing the right terminology, asking the right questions, or pushing in exactly the right way at exactly the right time.

A humane healthcare system would reduce friction and frustration instead of creating it. It would provide built-in coordination, clear communication, and meaningful support for patients trying to access care. It would recognize that many people cannot serve as their own advocate, administrator, and educator while they are already ill, and that not every person has a close family member or friend who can assist in transportation, advocacy, follow-up, and administration.

Access should not depend on who has the energy and knowledge to navigate a system that assumes clarity and capacity at the moment people are least able to provide either. When care depends on endurance, familiarity with complex systems, and persistence, illness itself becomes the barrier. A healthcare system that makes being sick a disadvantage is failing at its most basic purpose. It is structurally inequitable, and it ensures that those with the greatest need are the least likely to receive care.

Reimagining Accessibility: Undoing Ableism Among Disabled and Medical Communities

Ableism is the assumption that being able-bodied or non-disabled is the default, the goal, or the standard everyone should be measured against. People who do not fit that mold are expected to adapt, work harder, or accept being excluded.

Ableism comes in many forms. It can be intentional or unintentional, external or internal, and it often appears as judgment, disbelief, or praise that comes with conditions. At its core, ableism is the belief that some bodies and abilities are more valuable than others.

Ableism is prevalent not only in the non-disabled part of society, but even among those with disabilities and within the medical community that interacts with them. One common form shows up as judgment. It often sounds like, “I have this disability and I manage to work, so she should be able to work too.”

This way of thinking assumes that all disabilities function the same way, that all bodies respond similarly to effort, and that outcomes are purely a matter of willpower. It ignores differences in severity, progression, pain, fatigue, comorbid conditions, and access to support. It also ignores the fact that some people are paying an enormous physical and emotional price for what they are managing to do.

Another deeply ingrained form of ableism is the belief that if you want something badly enough and are willing to work hard enough, you can achieve it. Many of us were raised on this idea. For people with disabilities, this belief can be especially damaging. Some push and push, convinced that if they just try harder, success will follow. Instead, they worsen their condition, exhaust themselves physically and emotionally, and slowly break their own spirit. When they fail, they blame themselves, because they truly believe success would have been possible if they had worked hard enough. That belief itself is ableist, even when it comes from within the disabled community.

Intentional ableism occurs when barriers are known and deliberately ignored or dismissed. This includes business owners who refuse to add ramps or accessible entrances because they believe it would ruin the appearance of a building, even though they understand it excludes wheelchair users.

It appears when employers decline to hire qualified candidates after learning they need accommodations, without ever discussing what support might make the job accessible. It shows up when events are consistently held in inaccessible spaces and disabled people are told they can look at photos later or simply miss out.

Intentional ableism also includes denying legally required accommodations because they are viewed as too costly or inconvenient, or framing disabled people as burdens rather than as members of the community. In many cases, accessibility features are added only after complaints or legal action, and even then are implemented in the most minimal way possible.

Another type of ableism is unintentional. Most unintentional ableism is not about being unkind. It comes from assumptions people do not even realize they are making. It can sound like telling someone, “If I can push through the pain, so can you,” without recognizing that another person’s body or condition works very differently. It appears when spaces are designed with stairs as the primary entrance and accessibility is treated as an afterthought, even though exclusion was never the intent.

Unintentional ableism includes praising disabled people for ordinary tasks because those activities are assumed to be extraordinary, or believing that assistive devices alone have solved accessibility problems. Comments like “You do not look disabled” are often meant as compliments but still reflect harmful assumptions. It also appears when activities are planned around long periods of walking or standing, and organizers are genuinely surprised when someone cannot participate.

A third type of ableism is external. External ableism comes from the world around us. It exists in systems, policies, environments, and interactions that assume non-disabled bodies and minds are the norm. It includes buildings designed with stairs as the main entrance, workplaces that measure productivity without accounting for pain or fatigue, and public spaces that technically meet accessibility requirements but are still functionally unusable.

External ableism also shows up in attitudes, such as questioning whether someone truly needs accommodations, assuming disability limits intelligence or worth, or praising disabled people only when they appear to overcome their limitations in ways that make others comfortable. These messages are reinforced through social expectations, media portrayals, and institutional practices that treat disabled people as exceptions rather than as part of the population.

The fourth type of ableism is internal. Internal ableism happens when cultural beliefs about productivity, independence, and worth are absorbed and turned inward by people with disabilities themselves. It can look like believing you should be able to do something because others with similar diagnoses can, even when your body is clearly telling you otherwise. It shows up as guilt for resting, shame for needing help, or pushing past safe limits because you were taught that effort equals worth.

Internal ableism can also mean minimizing your own needs, delaying the use of assistive devices because they feel like a sign of failure, or blaming yourself when accommodations are necessary. Over time, this pressure erodes self-trust and self-compassion, leaving people feeling inadequate for limitations that are not personal failings.

Disabled people are often just as affected by external and internal ableism as their non-disabled peers because they grow up in the same ableist society as everyone else. Long before a disability is acquired, recognized, or diagnosed, most people absorb cultural messages that equate productivity with worth, independence with success, and limitation with failure.

Those beliefs do not disappear simply because someone becomes disabled. Instead, they are carried forward and applied both to yourself and to others with disabilities. When disabled people judge another person’s limitations, compare coping strategies, or assume that effort should lead to the same outcomes for everyone, they are often drawing on standards they were taught long before they had reason to question them.

Many disabled people have also been rewarded for acting as if they were able-bodied for as long as they could. Pushing through pain, minimizing symptoms, and avoiding accommodations are often praised by teachers, employers, doctors, and even loved ones.

Over time, this reinforcement teaches people that acceptance comes from appearing capable and low-maintenance. When those expectations can no longer be met, discomfort, judgment, or resentment often follow. This fuels external ableism toward others with disabilities and deepens internal ableism directed inward.

There is also fear at the center of this. Disability is unpredictable, and progression or decline can be deeply frightening. Judging another disabled person for needing more help can become a way of distancing yourself from that fear, as if believing “that will not happen to me” offers protection.

Internal ableism often grows from the same place. Admitting the full extent of your limitations can feel like giving up or confirming the very stereotypes society fears most. As a result, many disabled people hold themselves to impossible standards and, without intending to, reinforce those same standards in others.

Medical ableism adds another powerful layer to this experience. It appears in how chronically ill and disabled people are viewed and treated within the healthcare system. Medical care is often guided by the assumption that the goal is a return to a previous version of normal, rather than helping someone adapt to a changed body and build a sustainable life within new limits. When recovery to a former level of function is not possible, care may stall, shift into dismissal, or quietly withdraw.

New or worsening symptoms are frequently dismissed as “just part of the disability,” even when they represent meaningful changes in function or quality of life. Chronic pain, fatigue, neurological symptoms, and digestive issues are especially likely to be minimized.

Instead of being investigated, they are folded into an existing diagnosis and treated as something the patient should simply endure. Over time, patients learn that reporting symptoms may not lead to help and may even mark them as difficult.

Quality of life is also often undervalued in medical decision-making. The focus tends to remain on lab results, imaging, or disease markers, while daily function, comfort, and dignity are treated as secondary concerns.

For many chronically ill and disabled people, some level of pain or limitation is unavoidable. The goal is not perfection, but a life that is manageable and meaningful. When that reality is ignored, patients are left surviving rather than living.

Pain management exposes medical ableism particularly clearly. Some patients are denied necessary medication because of fear, stigma, or rigid policies that fail to account for individual circumstances. Others are labeled as drug-seeking simply for advocating for relief that would allow them to function at all.

At the same time, some patients are given pain medication dismissively, not as part of a thoughtful plan to improve quality of life, but as a way to end the appointment without engaging in deeper care. In both cases, the message is the same. The lived experience of the disabled person is not worth sustained effort.

Medical ableism reinforces the idea that disabled lives are inherently less, or that suffering is an acceptable condition of chronic illness. It discourages collaboration, dismisses patient expertise, and places unrealistic expectations on bodies that have already changed. Recognizing medical ableism requires a shift away from restoring a past that may no longer be possible and toward supporting a new normal that prioritizes safety, dignity, and quality of life.

Ableism is not just something that happens to disabled people. People with disabilities are just as likely as those without disabilities to be influenced by ableist thinking. It is so deeply woven into our culture, our work ethic, and our way of life that no one, no matter how well-meaning, is fully exempt. It is something we must all actively unlearn.

Actively unlearning ableism is not a one-time realization. It is an ongoing practice of noticing, questioning, and changing how you think, speak, and act.

It starts with awareness. This means paying attention to your own assumptions about productivity, independence, pain, and worth. When you catch yourself thinking that someone should be able to do something because you can, or because another disabled person can, pause and ask where that expectation came from. Many of these beliefs are inherited from culture, not grounded in reality.

Listening to disabled voices is essential, especially voices that differ from your own experience. Disability is not one-size-fits-all. People with different conditions, severities, resources, and support systems will have very different limits and needs. Believing people when they describe their pain, fatigue, or barriers, without comparison or judgment, is a key part of unlearning ableism.

Unlearning ableism also means redefining success. Instead of measuring worth by productivity, endurance, or independence, it means valuing sustainability, safety, dignity, and quality of life. Rest is not failure. Needing help is not weakness. Using accommodations is not giving up. These shifts are often hardest for disabled people themselves, because internal ableism is reinforced by praise for pushing through at any cost.

Another important step is examining how you respond to accessibility. When accommodations are inconvenient, slow, or expensive, do you see them as burdens or as basic inclusion? Do you view accessibility as optional or as a fundamental part of participation? Challenging those reactions, even silently, is part of the work.

Finally, unlearning ableism requires self-compassion. Everyone raised in an ableist culture will reflect it in some way. Catching yourself in ableist thinking does not make you a bad person. It gives you the opportunity to choose differently. Over time, those choices add up. Unlearning ableism is less about perfection and more about the willingness to keep noticing, learning, and adjusting.

Thoughts from the Author: There are many adaptations that help people with disabilities function in an inaccessible world. Wheelchairs, rollators, canes, crutches, speech-to-text, text-to-speech, visual enhancements, eye-tracking technology, and more. These tools are valuable and often essential. But when the world itself remains inaccessible, the presence of adaptations can give able-bodied people the false impression that accessibility has been solved.

A person in a wheelchair still cannot cross the gap to board a train. A person using a rollator still cannot climb an outdoor flight of steps with no railing, like those found at historic and grand sites across the country. Someone using crutches may be completely exhausted after navigating a gravel path with exposed roots and brush. An able-bodied person may see a wooden pier and assume it is accessible, without realizing that uneven boards can exhaust a rollator user or leave someone using a cane or crutches constantly off balance.

A temporary ramp placed over a few steps at the entrance of an otherwise accessible restaurant may be too steep for a wheelchair user to navigate independently. Relying on strangers for physical safety turns participation into a risk calculation rather than a simple outing.

Most people with disabilities understand that not everything can be made accessible. A historic colonial manor cannot have its second floor made accessible without altering the history being preserved. Narrow hallways that are too tight for wheelchairs or rollators cannot simply be fixed.

But in modern construction, accessibility is still too often treated as an afterthought. It is framed as a regulation to be met cheaply, while millions are spent on dramatic staircases and revolving front doors. Disabled access is routed to side entrances or long zigzag ramps that lead to less prominent doors, sending a clear message about who the space was designed for.

Older buildings are frequently retrofitted with small wheelchair lifts that require finding someone with a key and waiting for another person to operate the equipment. From experience, that person is often located in a part of the building the wheelchair user cannot reach without the lift. This raises serious safety concerns. In an emergency, disabled people are once again forced to rely on strangers, potentially putting multiple lives at risk because exits are inaccessible.

And yet, many people without mobility disabilities believe the world is fairly accessible now. The harder question may be whether those of us who are disabled, but not visibly or mobility impaired, sometimes hold the same belief. Ableism is not just something that happens to disabled people. It is something we all must actively unlearn.

Other articles you might enjoy include: Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices

A hostess at the hostess stand of a fancy restaurant is talking on the phone, answering a question. Her answer is, "Yes, we're accessible, once you get past the front steps." There are three steps patrons must get up to eat in the restaurant. Some able-bodies people don't understand that isn't really accessible at all.

Being disabled doesn’t always mean I can’t do something. Sometimes I can but doing it would come with a cost that more able-bodied people do not see and do not understand.

The truth is this; able-bodied people rarely find themselves in a position where they have to choose between doing something they really want to do and incurring long-term pain or even an injury that could put them in the hospital. For people with life-limiting conditions, we have to face this option often.

So, the question isn’t can I, it’s should I? And most of the time, the honest answer is no.

Will I sometimes do it anyway? Yes. But that choice has to be rare and made with caution, because even when I can do something, I will still pay for it later with pain, fatigue, soreness, a flare, or even a long-term injury.

Sometimes the situation truly warrants that cost. If a child were injured at the bottom of a stairway, and there was no one else to help, I would take that risk without hesitation, even knowing it could hurt me or cause me to fall. Some moments have a moral component that calls for action despite the risk.

But that is a rare exception. Something like visiting a new nightclub, eating at a fabulous restaurant, or any kind of optional outing that requires me to risk a fall or a broken bone is a situation where I can’t afford to take the risk. In those cases, the cost is not reasonable, and saying no is the responsible choice.

Living with a life-limiting condition means constantly weighing the risks against the consequences. Every yes has consequences. This is not about fear or unwillingness. It is about reasoning, responsibility, and life experience. When I say no, I am not being difficult or dramatic. I am making a deliberate choice to protect my health, my safety, and my ability to function tomorrow and beyond. That is not weakness. It is wisdom learned the hard way.

Here are more reflections on living with a disability, chronic illness, or a life-limiting condition.

When Change Sneaks Up on You – Jan Mariet’s A Day in the Life

My Story Isn’t Public Property – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

We’ve Been Gaslit So Long, We Gaslight Ourselves – Jan Mariet’s A Day in the Life.

Busting Disabled Parking Myths: Facts About Handicap Placards

A bright yellow background with colorful cursive words that say, "Don't Judge a Disability by its Visibility."

Busting Disabled Parking Myths

Disabled people are facing increasing harassment for using disabled parking placards (handicap hang tags & license plates). Let’s get the facts straight.

Myth 1: “You don’t look disabled.”

Fact: There is no single “disabled look.” Many disabilities are invisible, fluctuating, or not obvious to strangers. Some conditions, such as lung or heart disease, may not be visible at all but can severely limit how far a person can safely walk.

Myth 2: “You are too young to need a disabled parking placard.”

Fact: Disability has no age requirement. Children, teens, and adults of all ages can have serious medical conditions that limit mobility, endurance, or safety.

Myth 3: “Disabled parking is only for wheelchair users.”

Fact: Disabled parking is for people whose disabilities affect mobility, pain, fatigue, breathing, balance, safety, or the ability to walk distances, not just wheelchair users.

Myth 4: “If you can walk, you shouldn’t have a disabled parking placard.”

Fact: Being able to walk is not the same as being able to walk safely, repeatedly, or without severe pain or exhaustion.

Myth 5: “People get disabled parking placards easily.”

Fact: The application process is medical, evidence-based, and often difficult. Many people are wrongly denied and must appeal.

Myth 6: “Disabled parking misuse is widespread.”

Fact: Fraud exists, but it is rare. Media outrage exaggerates the issue while ignoring the real harm caused by the harassment of legitimate placard holders.

Myth 7: “Challenging people protects disabled parking.”

Fact: Public policing harms disabled people, not fraudsters. Enforcement is the responsibility of local authorities, not strangers in parking lots. Disabled people do not owe anyone an explanation of their disability or why they use a disabled parking placard. If a placard is displayed, a medical professional and the state have already determined eligibility.

Disabled parking is an accessibility tool, not a privilege. Trust the system, respect the placard, and let disabled people move through the world without fear of confrontation. Disabled parking exists to reduce harm and increase access, not to invite judgment or interrogation. Most disabled people are already navigating pain, fatigue, and medical uncertainty. The last thing they need is to defend their legitimacy in a parking lot. A little restraint and respect go a long way.

Other

articles you might enjoy:

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Disability Benefits Myths & Facts – Jan Mariet’s A Day in the Life

My Story Isn’t Public Property – Jan Mariet’s A Day in the Life

When Accessibility is Treated Like an Option – Jan Mariet’s A Day in the Life

When Change Sneaks Up on You

An image of the author at her desk, looking out the window at her yard and garden. This is a stylized, decorative photo symbolizing how much she wants to be out in the world, but must be on the inside, looking out.

Every once in a while, it sneaks up on me when I’m doing something ordinary: reading, writing a story, making a list, thinking about what needs to get done that day. Then suddenly it hits me that not so long ago, this same moment would have been effortless. I wouldn’t have planned it. I wouldn’t have had to pace myself. I wouldn’t have wondered whether I’d still be functional tomorrow.

What’s strange is how normal this life feels now. I’ve adapted. I’ve learned workarounds. I’ve adjusted expectations so gradually that over time, I’ve barely noticed them changing. Because of that, it can be hard to remember just how much has been lost.

I remember being able to do a full day’s work and still having energy left. I remember thinking clearly without effort. When I wanted to be social or go out to eat, I didn’t need to calculate the cost – both physical and financial. For the most part, I could trust my body and my brain to show up when I needed them.

I don’t dwell there often; you can’t survive if you do. But sometimes I miss that version of myself; not with bitterness, just with a quiet ache. And it’s not because this life has no value, but because it took so much adapting that the contrast only becomes clear in moments of stillness.

And then I take a breath, smile, and keep going, because this is the life in front of me now. Then I settle back into the quiet rhythm of the day and I’m glad to be alive.

For more reflective writing by Jan Mariet, try Living with Invisible Losses: Finding Meaning in Chronic Illness – Jan Mariet’s A Day in the Life

When the Table Was Full – Jan Mariet’s A Day in the Life or

When the Storm Changes You – Jan Mariet’s A Day in the Life.

When a Chronic Illness Breaks What Was a Strong Partnership

A couple standing back-to-back. The woman's eyes are downcast as she stands in a bedroom, symbolizing a life laden with chronic illness. The man is facing a path and the sun, signifying moving on to a new life.

It is not surprising when illness fractures a relationship that was already strained or unbalanced. In many partnerships, the now-ill partner quietly carried the majority of the invisible labor that kept daily life running. This often included managing finances, planning meals, buying groceries, doing laundry, keeping track of children’s needs, scheduling appointments, and holding the mental load of what needed to happen and when.

When chronic illness or cancer disrupts that arrangement, the imbalance becomes impossible to ignore. Tasks that were once handled seamlessly now demand attention and effort from the other partner. For someone accustomed to being taken care of, this shift can feel overwhelming. In the short term, they may step up. But as the reality sets in that the change may be permanent, frustration and resentment often follow.

Instead of recognizing the loss their partner is experiencing, some begin to frame the situation as a failure of effort. The now-ill partner is seen as no longer “pulling their weight,” rather than as someone whose capacity has fundamentally changed. Responsibility is deflected through familiar patterns. Help is offered conditionally, with statements like, “I’d help if I were given a list,” or “I don’t know what needs to be done!” Learned helplessness becomes a way to avoid accountability, even while walking past obvious work that needs attention.

What is often labeled as nagging is, in reality, an attempt to get follow-through on promises already made. When reminders stop, nothing happens. When reminders continue, resentment grows. Over time, this dynamic erodes trust and intimacy, not because illness has made one partner unlovable, but because the relationship was never built on shared responsibility to begin with.

What is harder to understand is when a strong, long-term relationship seems to inexplicably crumble. In these cases, both partners have grown comfortable with the way things were. They are accustomed to a familiar division of labor, whether it was truly balanced or not, it is their baseline, their ‘normal’ way of life. When illness disrupts that arrangement, the required shift can feel deeply unsettling. Tasks once handled quietly and reliably by the now-ill partner must be reassigned, and resentment can surface. The partner who is not ill often recognizes that the situation is beyond their loved one’s control, and even feels guilty for the resentment they cannot seem to prevent.

In the short term, most partners either step up or make arrangements for others (siblings, children, friends, hiring people to do jobs that the now ill partner once did) to fill in the slack. Most emotionally healthy people can handle quite a lot when they know it is a crisis, and is only for the short term.

But as the reality sets in that these changes may be permanent, the discomfort deepens. The unspoken wish becomes a longing for things to return to the way they were, back when their partner wasn’t ill, back when their partner wasn’t in pain or wasn’t so (understandably) needy. When that return to normal isn’t possible, some partners find they simply cannot cope with the loss of the life they expected and the comfort they once felt.

Many devoted partners remain present during the hardest moments. Like most people, they are often expecting a clear ending to the struggle. They imagine either a triumphant recovery or the tragic loss of their partner. They hope for the best, and steel themselves for the worst.

What even the most devoted partner is rarely prepared for is months, years, or even a lifetime of ongoing struggle. The moments of improvement feel like victories, but they are inevitably followed by setbacks that demand renewed endurance. It can be more than even the most devoted partner can bear.

Over time, even the most well-meaning partners can develop what might be called emotional fatigue. They grow tired of hearing about pain or witnessing ongoing suffering and protect themselves by pulling back. They may spend less time with their partner by seeking activities outside the relationship or home, or by retreating within the home into solitary distractions such as television, computer games, solitary hobbies, or scrolling. They invest less effort in the relationship, not out of cruelty, but out of self-preservation. Regardless of the reason, this withdrawal can feel like a profound abandonment to the partner who is ill.

This often leads the ill partner to become desperate for the closeness that once defined the relationship. The more they try to restore that connection, the more the other partner feels overwhelmed and the more they withdraw. The cycle feeds itself and deepens the emotional distance between them.

While it is not surprising when illness fractures a relationship that was already strained or unbalanced, the loss of what once seemed like a strong partnership can feel like the ultimate betrayal. For someone battling cancer or struggling with chronic illness, it can feel like being abandoned at the moment they are most vulnerable.

The hard truth is that there is no socially acceptable time to leave an ill partner, yet some partners feel they have no other option. Both experience profound loss, but in very different ways. The partner who is ill is left to carry grief, illness, and isolation all at once, often without the ability to rebuild or replace what was lost.

The partner who leaves must live with the moral weight of that choice, whether through guilt or rationalization, while forming a new life elsewhere. While they may seem incredibly happy in their new life, they may always have a silent guilt just below the surface that perpetually threatens their new happiness, and that keeps them from committing quite as much to their new relationship.

In the end, neither partner escapes unscathed. Illness reshapes both lives in ways neither anticipated, and the aftermath lingers long after the relationship ends.

If you’d like to read a similar article based more about the toll of chronic illness on friends and family relationships, try reading The Relationship Toll of Chronic Illness – Jan Mariet’s A Day in the Life.

The Relationship Toll of Chronic Illness

How Long-Term Illness Affects Relationships

Four friends (including one in a wheelchair) are sitting at an outdoor cafe having a great time together. Words across the top of the image say, "Belonging is something we all need."

We love stories with inspiring plots and triumphant endings. We celebrate people who heroically “beat” an illness or injury, and we mournfully grieve those who tragically die from it.

But chronic illness lives in the uncomfortable space in between, where there is no finish line, no victory speech, and no permission to stop fighting or reach a clear ending. There are no accolades for fighting an endless battle. There is no applause for persevering as symptoms progress rather than resolve.

People want a neat, tidy ending, either a triumphant recovery or a tragic conclusion. What most people are not prepared for is months or years, or even a lifetime of unrelenting struggle. Over time, even well-meaning friends can develop what might be called battle fatigue. They grow tired of hearing about the pain or witnessing the suffering and, quite logically, protect themselves by pulling back. They spend less time. They invest less effort. Not out of cruelty, but out of self-preservation.

At the same time, the person living with chronic illness often has less to give. Managing pain, fatigue, and unpredictable symptoms leaves little energy for maintaining relationships. Sometimes we take more than we give. Other times, we go quietly silent, trying to spare others from seeing our suffering. Neither nourishes a friendship.

It really is a two-sided street. Relationships require give and take, and chronic illness disrupts that balance in ways neither person can fully control. So, where is the middle ground? Can friendships survive when they become too one-sided for too long?

The truth is, very few people, whether the friend or the person living with chronic illness, can navigate this terrain without loss. It is difficult, exhausting, and emotionally fraught for everyone involved.

Is it any wonder that relationships fracture, friendships fade, and even family bonds strain over the course of long-term illness? Moving between periods of deep need and periods of withdrawal is more than many relationships can withstand. Even those that do survive are seriously changed in unimaginable ways.

I am not here to offer a magical solution or a sprinkle of fairy dust that makes everything better. No such remedy exists. As painful as it is to accept, many relationships that once felt unshakable do not survive the relentless nature of chronic illness. And often, no one is entirely to blame, or entirely blameless.

Real life is not a weekly sitcom or even a long-play series that wraps everything up neatly with a satisfying happily-ever-after. Chronic illness does not follow a script, and neither do the relationships shaped by it.

And still, not everything is lost. Some friendships do survive. Not because they are untouched by illness, but because they are willing to change shape. These relationships bend instead of breaking. They adapt to the reality of chronic illness and make room for uneven energy and long silences.

They learn new rhythms, new expectations, new ways of showing up. These relationships may be fewer, quieter, and less effortless than before, but they are often deeper, more honest, and more compassionate. And sometimes, new relationships grow in the space left behind. Friendships rooted not in who we used to be, but in who we are now. People who understand that presence does not always look like productivity, and love does not require fixing. These friendships are not built on constant availability, but on understanding.

And when older relationships do fall away, new ones often emerge. Connections shaped by shared experience, mutual grace, and the understanding that sometimes simply choosing to remain is enough.

If you’d like to read more about Chronic Illness and Life-Changing Disabilities you might try these articles.

My Disabilities Do Stop Me | When Disabilities Really Do Stop You

How People Respond to Your Chronic Illness – Jan Mariet’s A Day in the Life

The Truth About Chronic Conditions – Jan Mariet’s A Day in the Life

Why Holidays Can Be So Hard for People with Chronic Illness

Image of a warmly decorated door for a holiday celebration. At the bottom of two steps, a man in a wheelchair, holding a small wrapped gift is looking at the door, and realizing he can't get in. The words say, "Sometimes the distance between 'included' and 'excluded' is just one step.

People often assume that if someone with a chronic illness skips a holiday gathering, it is because we do not want to be there. Nothing could be further from the truth. We miss those moments more deeply than anyone realizes. Even small celebrations can feel like running a marathon with a body that is already on empty.

The Effort Behind Getting Ready

For most people, leaving the house is simple: shower, get dressed, grab your keys, and go. For those of us living with chronic illness, it is a carefully planned operation. Every small step, like washing hair, brushing teeth, getting dressed, and traveling there and back, costs energy we may not have. What looks like a single outing might take days of preparation and a week of recovery.

For me, even showering is a major effort. I use several assistive devices just to get clean. My long-handled silicone body brush helps me reach what I cannot. Afterward, I use a lotion roller that looks a bit like a small paint roller because I am unable to bend in certain ways.

People do not always realize the struggle that comes with arthritis and neuropathy in the hands. Opening a deodorant cap can be a challenge. If I leave it off, it dries up. I use an automatic toothpaste dispenser because I cannot squeeze the tube or twist the cap easily. Even the sprayer on my perfume can be tricky.

Then comes blow drying my hair. I cannot hold a typical dryer for long. My hands give out, and I drop it. There are countertop racks, but my counter is not big enough, and standing or bending to reach them is painful. After a lot of trial and error, I found a lightweight dryer that I can balance on the counter and hold by the nozzle. That is why I keep my hair short. It saves time, reduces pain, and makes the process manageable.

I often wonder if other women have to choose a hairstyle based on grip strength and how long they can tolerate pain in their hands. I doubt most people consider how much effort and concentration it takes just to get cleaned up each day.

The Complicated Art of Getting Dressed

Getting dressed might look simple, but for many of us it is a daily challenge. Putting on socks or shoes when you cannot bend, zipping zippers you cannot grasp, or hooking a bra with fingers that will not twist takes energy and time most people never think about.

I use a sock aid, a dressing stick, and a grabber to manage clothes. When zippers or buttons are unavoidable, I reach for a zipper pull and a button hook. Many shoes require a long-handled shoehorn. After I am dressed, I still need to put all those devices away so I can find them next time. It takes extra time and extra energy, which I do not have in abundance.

The Penalty for Looking Good

There is a strange penalty for looking good when you are chronically ill. People mean well when they say, “You look great,” but the phrase can sting. If we look too well, people assume we are exaggerating our illness. Some even congratulate us on recovering, as if our illness disappeared because we washed our hair and put on nice clothes. If we look sick, we are pitied or told to try harder.

We cannot win. Existing in public can feel like being on trial. That emotional strain adds another invisible layer of exhaustion.

The Mental Load of Being Around People

When your body lives in survival mode, processing sounds, lights, and conversation takes real effort. Following multiple conversations or navigating new environments can be overwhelming. What looks like zoning out is often us using every bit of energy just to stay present.

What sounds like cheerful background noise to others can feel like an assault on our nervous systems. Noise, flashing holiday lights, and overlapping voices can cause pain, dizziness, migraines, or sensory overload.

You might see us turning our heads from group to group, trying to decide which conversation to follow. When a group bursts out laughing or someone shouts across the room, we may physically flinch. Our bodies often stay in fight or flight, and that surge of sound can trigger panic or the need to escape.

A quiet space to retreat to during a gathering helps more than most people know. When that is not available, many of us leave abruptly. It is not because we do not enjoy the company. It is because our bodies cannot handle more stimulation.

The Risk of Illness and Awkward Moments

For people with chronic illness, a simple cold, flu, or COVID exposure can cause months of setbacks or lasting damage. Gatherings filled with hugs, shared food, and laughter are also filled with germs, and we cannot always take that risk.

There are awkward moments too. Many older gentlemen greet with a firm handshake. It feels friendly to them, and like a vise to someone with arthritis or neuropathy. When pain shoots through your hand and you grimace, the moment turns uncomfortable for everyone. No one intends harm, but it dampens the holiday spirit.

Food, Culture, and Understanding

Many people with chronic conditions have restrictive diets. We might bring our own food or skip eating altogether, not to offend anyone, but to stay safe from allergies, digestive issues, or intolerances. In many cultures and families, refusing food is seen as rude, which makes this even harder.

I have so many food restrictions that my neighbors and I joke about me coming over to ‘not eat.’ They have watched my medical journey and understand why I cannot eat most foods. Others sometimes take offense. They assume I am being picky or dramatic. I have learned to laugh, but I will not make myself sick to spare someone’s feelings.

Scents and Sensitivities

Perfume, air fresheners, scented candles, and cleaning sprays can trigger severe reactions for many people with chronic illness. I am fortunate that this is not one of my personal challenges. For others, a home that smells fresh and festive can lead to hives, migraines, or even an emergency room visit. That is not the kind of holiday anyone wants.

The Struggle for Accessibility

Even if someone does not use a wheelchair every day, steps, narrow spaces, and low seating can make a home inaccessible. We are not trying to be difficult guests. We are trying to be safe.

I cannot climb steps without help. If a home has many stairs, I cannot go. One or two steps are possible if someone assists me. That can mean waiting outside until someone notices, or asking a stranger for help. Both are awkward and embarrassing. If no one comes, you either leave or call inside, which feels humiliating.

Low furniture is another obstacle. I cannot safely rise from a chair that sits lower than a certain height, and overstuffed sofas are out of the question. I have learned to ask for a kitchen or dining room chair so I have a safe place to sit.

Bathrooms can be their own obstacle course. It is not safe for me to use a low toilet unless there are grab bars or something sturdy nearby. One of the first things I do at a party is quietly check the bathroom. If I cannot use it safely, I plan to leave before I will need it. I do not explain why. I make a polite excuse. Saying, “I have to leave because your toilet is inaccessible,” is not something I can bring myself to do.

A Message for the Able-Bodied

If you have never had to think about accessibility, try imagining it for a moment.

How much would you enjoy going to a party where you had to ask someone to help you get in the front door? Would you enjoy having to lean on a near-stranger for support just to enter the house? Would that make you feel festive, or embarrassed and dependent?

Imagine worrying whether you can find a place to sit and join in conversation, knowing that most of the furniture is too low for you to use. You may find one suitable chair, but it is off to the side, far from the laughter and warmth of the group.

Now picture being tempted by foods you used to love but can no longer eat. You bring your own food, your own drink, maybe even your own utensils, and must figure out where to keep them or carry them with you all night. How festive does that sound?

And finally, think about being unable to use the restroom safely. Would you be comfortable telling your host that you need to leave because their toilet is too low or lacks grab bars? There is no graceful way to say that without embarrassing either of you.

If you have never had to consider these barriers, consider yourself not just lucky, but privileged. Accessibility is not about convenience. It is about dignity.

Getting There and Getting Home

Even getting to the party can be complicated. If someone offers you a ride, can you get in and out of their car? Will your assistive device fit in their trunk, and will their trunk even be empty? If you need to leave early because you are in pain or overstimulated, how will you get home? Asking someone to leave early for you feels awful, but waiting hours in agony is worse.

Driving yourself has its own challenges. Can you park close enough to the house? Can you manage gravel, grass, or a steep driveway? Can you lift your mobility aid out of the car? These are not small details. They are the difference between attending and staying home.

Final Thoughts

None of this is about being difficult. Most of us with chronic illnesses would give anything to join the fun without a second thought. We miss things we desperately wish we could do. So, if someone declines your invitation, cancels at the last minute, or needs extra help, please understand. It is not that we do not want to be there. It is that sometimes our bodies will not let us.

How to Help During the Holidays

1. Offer flexible invitations. Let your friend know that showing up late, leaving early, or changing their mind is perfectly okay. Flexibility means everything.

2. Ask about accessibility in advance. A quick message like, “Is there anything that would make it easier for you to join us?” shows care and avoids awkward surprises. If you are choosing a place to hold a holiday celebration, and you are inviting people who use wheeled assistive devices or people who aren’t able to climb stairs, choose an accessible location.

3. Provide a quiet space. A calm corner or spare room where someone can rest or escape noise can make the difference between staying or leaving.

4. Respect food and scent sensitivities. Avoid strong fragrances, and don’t pressure anyone to eat what you’ve made. They are not rejecting you, they are protecting their health.

5. Offer practical help. Help carry bags, open doors, or bring food to their seat. Small gestures add up to big relief.

6. Don’t make assumptions. If someone looks well, that doesn’t mean they feel well. Compliments are fine, but skip the “You look great, you must be better!” comments.

7. Stay connected. Even if your friend can’t attend, include them in photos, video calls, or messages. It reminds them they are missed and valued.

Here are some other articles that might pique your interest.

Many Wheelchair Users Can Still Stand and Walk – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Let’s keep the conversation going! Add your comments below!

My Story Isn’t Public Property

Stop Asking, “What Happened to You?”

Image of a man slumped over in his wheelchair, eyes downcast, as a smiling female reporter holds a microphone towards him and asks, "So, what happened to you?"

Have you ever noticed that when you live with a visible disability, total strangers sometimes feel entitled to ask, “So, what happened to you?” Not trying to be rude here, but believe it or not, I don’t owe my medical history and life story to anyone, least of all strangers.

It’s as if people see a disabled person and immediately think, “How terrible! I wonder what happened?” Then, instead of keeping that thought private, they actually ask. You would never ask such a personal question to a non-disabled person you’ve just met, so why is it considered acceptable when the person is disabled?

Too often, people see us as broken or as the subjects of some tragic story they’re curious to hear. Or they want an inspiring tale of triumph over tragedy, when in reality, these experiences are deeply personal and sometimes too personal to share even with close friends, much less with strangers or casual acquaintances.

Let’s normalize respecting boundaries and not treating disabled people like public stories waiting to be told.

Author’s Note: In writing this article, I made an important realization about myself. I have been so conditioned to just accept this intrusion that I not only answer them, but tend to blab my entire life journey. I overshare with strangers, I think, because I still feel the need I’ve felt all my life — to ‘prove’ that I am worthy. I am now making a conscious effort to stop doing this!

So, I’ve been trying to think of some things I could say to a person who asks this intrusive type of question, that aren’t rude, but that make the point that their question is inappropriate and that I have no intention of answering it.

Here are a few I thought of:

“That’s actually pretty personal. I’d rather not get into it.”

“I appreciate your concern, but that’s not something I talk about with strangers.”

“It’s a long story, and not one I usually share.”

“That’s actually a really personal question for disabled people. Most of us prefer not to be asked.”

“I know you probably meant well, but that’s not something strangers should ask.”

“I’m happy to chat, but not about my medical history.”

“Just so you know, asking a disabled person what happened can feel invasive.”

If you have any other suggestions, please leave me a comment. I’d love to know what you think!

Take a moment to explore other articles about living with disabilities or chronic illnesses by Jan Mariet.

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Have you ever had a stranger ask you an intrusive question like “What happened to you?” Leave a comment and let’s create a space where our stories remind others they’re not alone.

Living with Invisible Losses: Finding Meaning in Chronic Illness

Image of a person fading away into the background, and faint words saying, "The quiet grief, the missed moments, the life that used to be yours..."

When you live with a chronic illness, there are so many things you wish you didn’t have to face, yet they become part of your life.

There is the loneliness of watching the world move forward while you stand still. Friends make plans, families gather, and life goes on, even when you can’t take part.

There is the heartbreak of memories that belong to the person you used to be. You remember the energy, the freedom, and the ease of doing simple things without thinking twice.

There is the pain of not being able to show up for the people you love in the ways you once could. You miss birthdays, dinners, trips, and quiet everyday moments that used to come easily.

There is the grief of living with a loss no one else can see. The world doesn’t recognize this kind of pain, but it lives inside you every day.

There is the ache of missing out on the small, ordinary moments that most people take for granted. Even something as simple as going for a walk, running errands, or sharing a meal can feel out of reach.

And there is the loss of freedom. The freedom to wake up and simply do what you want, without calculating pain, fatigue, or consequences.

These are the unseen losses that shape your world in quiet, lasting ways; changes that settle deep within you, reinventing how you see yourself and the world around you. Acknowledging them doesn’t mean giving up. It means honoring the strength it takes to live a life that looks different, yet still holds meaning, love, and hope.

Take a moment to explore other articles about living with disabilities or chronic illnesses by Jan Mariet.

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

How People Respond to Your Chronic Illness – Jan Mariet’s A Day in the Life

Our Resilient Hearts is more than a collection of stories; it’s a journey toward hope, healing, and hard-earned strength. Author Jan Mariet weaves together powerful personal essays, thought-provoking prompts, and inspiring affirmations that help readers reflect on their own resilience and reclaim meaning in the face of adversity. Our Resilient Hearts by Jan Mariet is available in paperback on Amazon.

Our Resilient Hearts: Thriving Beyond Chronic Illness: Mariet, Jan: 9798315554523: Amazon.com: Books

Have you felt invisible losses too? Leave a comment and let’s create a space where our stories remind others they’re not alone.

Designer Shoes and Disability: Why Judging Others Is Obscene

A woman recently shared that she was accused of “scamming the system” because, in her wheelchair, she wore designer shoes. What her critics didn’t know, and didn’t care to ask, was that the shoes were a gift from her daughter.

A decorative image of a wheelchair user, a white, middle-aged woman, wearing stylish shoes with confidence, representing dignity and self-worth. She is leaving a medical office.

This kind of judgment isn’t rare. Disabled people are often scrutinized for daring to own or enjoy anything that seems “too nice.” A phone, a manicure, a night out, or yes, even a pair of designer shoes, becomes “evidence” that they must be cheating the system — as if disability benefits are supposed to buy only misery.

Let’s be clear: disabled people don’t have to live in visible desperation to be considered “worthy” of help. They deserve a life, one with comfort, dignity, and moments of joy. And those benefits people resent so much? They rarely cover even basic living costs, much less luxuries.

What’s truly obscene is the assumption that strangers can judge who is or isn’t “really” disabled based on a snapshot in time. Many disabilities are invisible. Many people are dealing with mental health conditions they don’t disclose because of stigma. So, when someone says, “I know she’s not disabled because she looks fine” or “he can walk, so he must be faking,” they’re not exposing fraud; they’re exposing their own ignorance.

No one owes the public an explanation of their medical history. The Social Security Administration already requires extensive documentation and verification before granting benefits. If they’ve been approved, that’s the end of the conversation.

Instead of policing how disabled people live, dress, or smile, maybe we should ask why society is so uncomfortable with the idea of disabled people having anything good in their lives.

Because the truth is simple: Joy is not evidence of fraud.

If you enjoyed this article, you might enjoy Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Many Wheelchair Users Can Still Stand and Walk

When most people picture a wheelchair user, they imagine someone who cannot walk at all. In reality, that description only fits a small minority of wheelchair users. Many people who use wheelchairs can stand or walk short distances but rely on mobility aids for safety, energy management, or independence. Wheelchair use is not always about the inability to walk. It is often about the cost of walking: physically, energetically, and emotionally.

Why People Use Wheelchairs

A group of friends, including one friend in a wheelchair, chat, laugh, and have a good time. The caption on the photo says, "Belonging is something we all deserve."

“Why do people use wheelchairs?” It seems like a simple question: “Because they can’t walk.” But that answer leaves out most wheelchair users. Many can take a few steps or stand briefly, yet walking may cause pain, fatigue, dizziness, or imbalance. A wheelchair provides a safer, more sustainable way to move through the day and participate in activities they might otherwise have to skip.

Mobility and stamina can vary greatly from day to day, depending on pain levels, fatigue, or symptom flare-ups. Some people use a wheelchair occasionally, while others rely on one regularly. During busy periods or stressful times, wheelchair use often increases as people try to manage symptoms while still engaging in daily life. Rather than symbolizing limitation, a wheelchair often represents freedom, safety, and inclusion.

How Common Is Ambulatory Wheelchair Use?

There is no official U.S. statistic separating wheelchair users who cannot walk from those who can. However, national surveys show that most wheelchair users report conditions such as arthritis, stroke, multiple sclerosis, or orthopedic disease, conditions that often allow partial mobility. Only a smaller share cite complete paralysis. In short, many wheelchair users are ambulatory, while a minority are completely unable to walk.

Ambulatory wheelchair users are those who can walk or stand to some extent but use a wheelchair to conserve energy, reduce pain, or prevent falls. Many chronic illnesses are unpredictable. Someone might walk into a restaurant one day and need their wheelchair the next.

Outsiders sometimes misinterpret this variability as inconsistency or exaggeration, when it is actually a hallmark of fluctuating conditions such as multiple sclerosis, Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), or chronic pain disorders.

Conditions that often involve partial mobility include arthritis, lupus, POTS, long COVID, Ehlers-Danlos syndrome, chronic fatigue syndrome, neuropathy, and spinal or joint disorders. Being able to take a few steps does not mean someone can walk safely, consistently, or without pain.

Myths and Misconceptions

Myth: Wheelchairs are only for people who cannot walk.
Fact: Most wheelchair users can walk, just not safely, consistently, or far enough.

Using a wheelchair is not giving up or taking the easy way out. It is choosing safety, independence, and participation over exhaustion, injury, or isolation. Some ambulatory wheelchair users walk indoors but use their wheelchair in airports, shopping centers, or places that require long distances. Others use it during flare-ups, in bad weather, or when fatigue or dizziness increases.

Unfortunately, mobility aids are sometimes viewed as a “last resort,” but early use can prevent overexertion, falls, and long-term damage. Insurance policies and medical gatekeeping often make it difficult for ambulatory users to access appropriate equipment, reinforcing the myth that wheelchairs are only for those who cannot walk.

A Tool of Liberation, Not Limitation

For many people with chronic illness, a wheelchair is not a symbol of paralysis; it is a symbol of freedom. It allows them to attend events, travel safely, and enjoy life without collapsing in pain or exhaustion. Being able to walk a few steps does not mean someone can walk a few blocks, stand in a long line, or navigate uneven ground. The ability to walk does not erase the need for wheels.

Energy Budgeting and Wheelchair Use

Energy budgeting, sometimes called energy management or spoon theory, is one of the least understood aspects of chronic illness. Think of energy as a limited daily allowance, like money in a checking account. Healthy people start the day with a full balance, but people with chronic conditions begin with a smaller and less predictable budget. Every activity, physical, mental, or emotional, withdraws energy: showering, dressing, cooking, walking, holding a conversation, or managing pain. When the account runs dry, symptoms such as fatigue, pain, or dizziness worsen, and recovery can take hours or days. Energy budgeting is the process of spending that limited energy wisely to avoid “crashes” or flare-ups.

A wheelchair plays an essential role in this budgeting process. It is not only about whether someone can walk but about how much energy walking costs and whether it is worth spending that energy. Someone with arthritis may walk across a room but lose the energy needed to cook or socialize later. A person with POTS or Ehlers-Danlos syndrome might stand for a few minutes but faint or dislocate a joint if they push too far. A person with multiple sclerosis might walk short distances but use a wheelchair to prevent fatigue or heat-related symptoms. By using a wheelchair, they conserve energy for the things that bring meaning and joy, not just survival. A wheelchair is, in this sense, a powerful budgeting tool; it allows people to save their energy for what matters most.

Final Thoughts

Wheelchair use is not simply about whether someone can walk. It is about the effort, pain, and risk that walking may cause. For people with chronic illnesses, walking even short distances can deplete the limited energy they need for self-care or participation in daily life. Using a wheelchair helps them prevent fatigue, reduce pain, and live more fully. A wheelchair does not represent loss; it represents access, safety, and choice—the freedom to live life on one’s own terms.

Other articles that might interest you are:

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Disability Benefits Myths & Facts – Jan Mariet’s A Day in the Life

The Disability Catch-22

When Trying to Work Makes You Poorer: The Trap Disabled People Face

This image shows a calendar page, with many medical appointments scheduled during work hours, since doctors don't work evenings or weekends. The title say "Why Trying to Go Back To Work When You Are Disabled Is So Hard To Do"

People love to say, “If they really wanted to work, they could.” It sounds simple. It sounds fair. But it’s wrong.

Most people have no idea how the Social Security Disability system actually works. The truth is that working while disabled is a high-stakes balancing act that few healthy people could tolerate.

The Limit That Isn’t Livable

A disabled person can only earn a limited amount before being considered “gainfully employed.” The Social Security Administration calls this threshold Substantial Gainful Activity (SGA). The number changes slightly each year, but it’s around $1,080 per month, which adds up to about $12,960 a year. That figure is supposed to represent the point where someone is capable of supporting themselves. In reality, it is not even close to a living wage.

If a disabled person earns more than that amount on a regular basis, the SSA can decide that they are no longer disabled. That decision can stop their monthly benefits and trigger a stressful reevaluation of their entire case. Even if they are still sick, still in pain, and still unable to function consistently, they may be told they can now “work full-time.”

The “Trial Work Period” Sounds Helpful, But Isn’t

There is a program that allows people on disability to test their ability to work without immediately losing benefits. It’s called the Trial Work Period. During this time, you can earn more than the SGA limit for up to nine months within a five-year window and still receive your full disability check.

It sounds like a good deal, but the rules are confusing. Once those trial months are used up, the next stage—called the Extended Period of Eligibility—lasts about three years. During that time, benefits might continue for months when earnings fall below the limit, but paperwork is constant and every dollar is tracked. If you make one small mistake or earn slightly too much, you can receive an overpayment notice or face a new review of your case.

Medicare: Not Gone, But Still at Risk

Medicare coverage does not vanish the moment someone starts working, but the security of it fades. It can continue for around 93 to 99 months after benefits stop, which sounds generous until you realize that every rule change, every pay stub, and every evaluation can shake that stability. No one wants to gamble their only healthcare coverage on bureaucratic promises.

Why “Just Get a Job” Isn’t That Simple

Many disabled people would love to work in some capacity. What most people don’t understand is that disability rarely means total inability. It means limited, unpredictable capacity.

Many chronic illnesses cause flares, periods when symptoms suddenly worsen for hours, days, or weeks. A person might function fairly well on Monday but be bedridden by Wednesday. Fatigue, pain, inflammation, or neurological issues can appear without warning. Employers may expect a regular schedule, but the body does not cooperate with a calendar.

Even part-time jobs are difficult because medical care takes time. Specialists often book appointments only on weekdays. Treatments, lab work, imaging scans, and physical therapy are almost always scheduled during standard work hours. There is no such thing as “just do it after work” when your doctor’s office closes at five o’clock and you may have three or four appointments in a single week.

For a disabled person to keep any kind of job, it must be flexible. It must allow frequent time off for appointments, procedures, and recovery days. It must allow for sick leave when a flare hits or when pain, exhaustion, or dizziness makes it impossible to drive or sit upright.

These jobs are rare, and most do not pay enough to replace lost benefits. The result is that many disabled people stay below the earnings limit, not because they lack ambition, but because the system punishes them for trying to rise above it.

The People Behind the Paperwork

Most disabled people did work. They worked for years—often decades—before illness or injury took away the ability to keep going. They paid taxes. They paid into the very system that now scrutinizes their every paycheck. They want to contribute, but they are trapped between need and penalty.

The Real Problem

We tell disabled people to be independent, then punish them when they try.
We say work builds dignity, but we design rules that destroy stability.
We call it “support,” but we turn it into fear.

If we truly want disabled people to thrive, we must change the structure that forces them to choose between survival and self-sufficiency.

The disability system should make it safe to try, safe to fail, and safe to live.

Take a moment to read other articles on similar topics.

Understanding Disability Benefits in the United States – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Getting Disability Isn’t Easy – Jan Mariet’s A Day in the Life

Understanding Disability Benefits in the United States

A group of 5 people, some with visible disabilities others without are standing at a sign post that points in 4 directions. It points to SSDI, SSI, Short-term, and Long-term. In the background is a map of the United States.

When someone in the United States says they are “on disability,” that can mean several very different things. “Disability” isn’t one program. It’s an umbrella term that covers a mix of government, employer, and private systems, each with its own rules and requirements.

Two of the most common programs are government-run: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Only SSI covers people who have not worked long enough to earn Social Security credits.

In addition, many employers offer short-term and long-term disability insurance, which are privately administered and paid for either by the employee, the employer, or both. These policies are separate from Social Security and can vary widely in coverage and cost.

A few states also run their own temporary disability insurance programs, and veterans may qualify for disability benefits through the Department of Veterans Affairs (VA).

Understanding which type of disability program someone is referring to matters, because each one operates under very different rules and offers very different levels of support.

1. Federal Programs: SSDI and SSI

The two main federal programs are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

For SSDI, which is based on your prior work history and the amount you paid into Social Security taxes, the average monthly benefit in 2025 is about $1,580 to $1,630, or roughly $18,900 to $19,600 per year. The maximum possible payment for someone who had very high lifetime earnings is about $4,018 per month, or a little over $48,000 per year, but very few people receive that amount. Most disabled workers who had lower wages, intermittent employment, or needed to leave the workforce early because of illness receive well below the average.

After two years on SSDI, recipients become eligible for Medicare, but it is not free. The monthly premium for Medicare Part B is deducted directly from their SSDI check. In 2025, that premium averages about $175 per month, which equals more than $2,000 per year. Many people also purchase a Medicare supplement plan or a Part D prescription drug plan to fill the gaps in coverage. Those plans can easily add another $100 to $200 or more per month, reducing take-home benefits even further. Even with Medicare, there are still out-of-pocket costs such as deductibles, copays, coinsurance, uncovered medications, and medical equipment that patients must pay themselves.

For SSI, which is a needs-based program designed for people with very low income or limited resources, the maximum federal benefit in 2025 is $967 per month for an individual and $1,450 per month for a couple. That equals about $11,600 per year for a single person and $17,400 per year for a couple. Some states add a small supplement, but even with that, the typical SSI recipient receives far less than the maximum because the payment is reduced by any other income or support they receive. The national average payment for SSI tends to fall around $700 to $760 per month, or roughly $8,400 to $9,100 per year, depending on age and personal circumstances.

Both SSDI and SSI are adjusted slightly each year for cost-of-living increases, but even with those adjustments, the amounts are often far below what is needed for basic survival. Rent, utilities, food, and medical costs usually exceed what these programs provide. For many disabled people, these benefits keep them just above complete poverty, but not far from it.

2. Employer-Provided Disability Insurance

Some workers have access to short-term disability (STD) and long-term disability (LTD) coverage through their employers. These are private insurance policies, not government programs.

Short-term disability usually replaces 40–70% of wages for a few weeks up to six months.
Long-term disability often replaces 60–70% of wages after a waiting period of about 90 days, and it may continue for several years or until retirement age.

However, “access” does not mean “coverage.” According to the Bureau of Labor Statistics, about 41% of civilian workers have access to STD and 35% to LTD. Those figures include both full-time and part-time employees, but access is not evenly distributed. Around 52% of full-time workers can get STD, compared with only 20% of part-time workers. Access to LTD follows a similar pattern.

Even when offered, these benefits are not automatic. Many employers require workers to enroll within the first 30 days of employment to receive “guaranteed issue” coverage. After that, insurers can require health questionnaires or medical exams. For anyone who is already disabled, those medical requirements usually mean an automatic denial.

Costs also vary. Individual LTD policies typically cost about 1–3% of annual income. For lower-wage workers, that can be unaffordable, and if the employer pays the premium, any benefits received are taxable income.

3. State Disability Programs

A few states run their own short-term disability insurance programs that cover non-work-related illness or injury. These include California, Hawaii, New Jersey, New York, Rhode Island, and Puerto Rico. Benefits and duration differ by state, but most cover six to fifty-two weeks and replace 50–70% of wages.

4. What Access Really Means

Having access to disability insurance is not the same as being protected by it. Part-time and low-wage workers are the least likely to have coverage, even though they are often the ones who need it most. Many disabled people cannot buy LTD later because pre-existing condition clauses make them ineligible.

5. A Final Word

The disability system in America was designed decades ago for a workforce and economy that no longer exist. Disability insurance in the U.S. is a patchwork of programs that often leave large gaps. Federal programs have strict medical and income rules. Employer insurance depends on job type, enrollment timing, and health status. And millions of workers, especially those in retail, service, and part-time positions, have no realistic safety net at all.

Understanding those distinctions matters because until we fix the gaps, “disability coverage” remains a promise that too often disappears the moment it’s needed most.

Behind every program and policy number is a person trying to survive. Disability benefits were meant to provide stability and dignity, but too often they fall short of both. The truth is that no one plans to become disabled, and few understand how thin the safety net really is until they need it. Until these systems are updated to reflect the real cost of living and the unpredictable nature of chronic illness, millions will remain one setback away from losing everything.

Read articles on similar topics:

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Getting Disability Isn’t Easy – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life

This image shows a group of friends sitting at a table laughing. One friend is in a wheelchair. They are all having a great time together.

People act like disabled folks should live on moral rations. The minute we buy a coffee, order takeout, or subscribe to Netflix, someone gasps, as if joy requires a doctor’s note.

We’re not Oliver Twist, holding out an empty bowl to some bureaucratic overseer saying, “Please, Sir, I want some more.” And when we dare to ask for something beyond survival — a treat, a break, a small comfort — they act shocked. “More? After all you’ve been given?”

Here’s the thing: disabled people don’t exist to make the able-bodied feel generous. We don’t need to prove our worthiness before buying a frozen yogurt or enjoying a hobby. We’re not props in your austerity play.

Joy isn’t a luxury item. We have as much right to pursue joy and happiness as anyone else. It’s a human right. We deserve the same small comforts everyone else takes for granted, no apologies, no explanations, no empty bowls.

Here are some other articles you may enjoy.

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

The Truth About Chronic Conditions – Jan Mariet’s A Day in the Life

Have you ever had an able-bodied person judge you because you were doing something fun or enjoyable, because you were out on an adventure with friends, or simply enjoying a rare extravagance, like a decadent dessert at a nice restaurant? Leave a comment and let’s create a space where our stories remind others they’re not alone.

Why I Wrote “The Good Old Days — But For Whom”

Most of what I write, whether it’s a story, article, or book, comes from something I’ve lived through in one way or another. My recent piece about the so-called “good old days” in education, when children sat in rows, listened to their teachers, and followed the rules, comes directly from my own school memories of the late 1960s and early 1970s.

But that era so many people romanticize left out an entire group of children. Before 1975, students with physical or intellectual disabilities had no federal legal right to a public education in the United States. Yes, education has always been governed by the states, and a few had limited special programs—but most children with disabilities were simply excluded.

If a child didn’t “appear” to have an IQ of at least 70, they were often turned away at the schoolhouse door. And even for those who might have qualified, schools weren’t required to be accessible. There were no ramps, no elevators, no accessible bathrooms, no accommodations.

The rights and protections we take for granted today are only about fifty years old. And even after that, it took nearly two decades for schools to figure out what those rights really meant in practice.

So, here is how the history of special education in the US collides with my life. I was born with severe bilateral hip dysplasia (complete dislocation on one side, and neither acetabulum was formed enough to be usable.) Between ages 1 and 4 ½, I had 12 reconstructive surgeries, which also included being in multiple body casts for the better part of 3 years, and in a specialized position brace when not in a body cast, just so I’d be able to walk. These surgeries included having my pelvis broken, reshaped, and restructured multiple times, and because I had no functioning acetabulums, I had what were called “notching procedures” where they actually cut notches into my pelvis to be used to hold the femoral heads (and which, of course, wore out as I grew, and had to be redone multiple times. These also meant I had no synovial fluid on either side, so walking was incredibly painful as it was bone-on-bone from day one.) This was back in the 1960s in the US, and these surgeries were considered miraculous at the time.

I remember as a child, my parents drilled into me that I was NOT handicapped! (That’s the word they used then, not disabled.) Why did they do that? Because handicapped children in the US had no legal right to an education then! I was told if anyone asked me why I walked ‘funny’ I was to tell them that I had a problem with my leg when I was born, the doctors fixed it, but it left me a little lame. (If that wasn’t an understatement of what really happened, I have no idea what would be!)

I didn’t understand until much later why they did this. It was their way of making sure I got to go to school. There were no ‘handicapped’ students at my school (other than me) unless you counted the one little boy who had to wear an eye patch on one side because he had strabismus. Of course, that eye patch was temporary. Most disabilities aren’t. It wasn’t until 1975 that things changed in the US, and handicapped children gained the Federal right to a free, appropriate education.

Later in life, I became a teacher myself, and I’ve watched the pendulum of change in the US, from no education for children with disabilities, to education that was less than ideal (and in some cases, barbaric), to what we have today, a well-intended system that is at its breaking point.

This is the reason I wrote this article, and the reason I wanted to share it with you, my fellow people with disabilities. If you’d like to read it, here is the link. https://janmariet.com/the-good-old-days-but-for-whom/

If we forget our past, we are doomed to repeat it.

The Good Old Days — But for Whom? When Schools Changed: The Forgotten Truth About Inclusion and Exclusion

The Forgotten Truth About Inclusion and Exclusion

1960s class on the front steps to the school, with the teacher and principal standing in the background. There are no disabled students in this picture. Schools in the 1960s didn't have ramps or any accessibility features.

People love to talk about how much better schools were “back in the day.” They remember the 1950s through the early 1970s as an age of discipline, manners, and respect for teachers. But that nostalgia leaves out the children who weren’t there at all, and the harsh realities for those who didn’t fit the mold.

Who Wasn’t in the Classroom

Before 1975, most public schools set IQ cutoffs for attendance. Many districts refused enrollment to children whose IQs fell below 70, labeling them “uneducable” or simply “trainable.” Those children were often sent to state institutions or “training schools” designed to teach simple, repetitive tasks like folding towels or sorting utensils, not reading, writing, or math. Others stayed home entirely.

Students who were blind, deaf, or physically disabled were typically sent to special residential schools, often far from their families. Parents might see them only on weekends or holidays. And because public buildings were not required to be accessible, even mildly disabled children were shut out of neighborhood schools. There were no ramps, elevators, or adaptive devices. Bathrooms were inaccessible, and classrooms were packed tightly with rows of desks, leaving no space for mobility aids or wheelchairs.

Institutionalization and the Lost Generation

Conditions in many institutions were bleak. Children labeled “mentally retarded” or “behaviorally disturbed” often lived in overcrowded, understaffed facilities. Education was minimal, if it existed at all. Some were restrained, neglected, or warehoused for life. The heartbreaking images later released from places like Willowbrook State School revealed just how far from “the good old days” those years really were. (Read the endnote on the Dark Legacy of Willowbrook for more information on the Willowbrook State School.)

The Illusion of Order

In regular classrooms, order and conformity were valued above all else. Corporal punishment was common. Children were expected to sit still, memorize, and obey. Those who could not were labeled as defiant or lazy, when in reality many had undiagnosed conditions such as ADHD, autism, or dyslexia.

Gifted children often struggled too. Those who thought creatively or challenged ideas were seen as troublemakers. If they finished their work quickly or questioned teachers, they were accused of showing off. Some were pushed ahead a grade or two based solely on academic performance, even though they were not emotionally ready for that leap. Many of these bright but misunderstood students eventually became alienated and dropped out of school completely.

Grouping and “Tracking”

By the 1960s, many schools used ability grouping, or “tracking.” Students were sorted into high, middle, or low groups based on IQ scores or test performance.

The “high” group, usually made up of middle-class white students, thrived under challenging work and high expectations.
The “middle” group received average instruction and maintained steady progress.
The “low” group was assigned remedial work with minimal expectations. These classes were often led by teachers who were inexperienced, struggling professionally, or approaching retirement and worn down by years of classroom stress. The message to those students was clear: no one expected much.

What was meant to streamline instruction ended up boxing students in instead. Students rarely moved between groups, and those in the lowest tracks often stayed there for their entire schooling. Many of these children had undiagnosed learning disabilities that would not be recognized until years later.

The Struggle Toward Inclusion

When the Education for All Handicapped Children Act (Public Law 94-142) passed in 1975, it promised to change everything. But early implementation was chaotic. Students with widely different needs, physical disabilities, developmental delays, emotional disorders, and learning challenges were lumped together in “special education” rooms at the end of the hall. Teachers had little training and no aides. When behavior or frustration escalated, some schools relied on isolation boxes or padded “quiet rooms,” believing these were therapeutic. They were not. They were contained.

The Evolution and Reality of Special Education Teachers

When special education first appeared in public schools in the 1970s, there was no clear model to follow. Many of the first special education classrooms were staffed by teachers who had general education or psychology backgrounds but no formal training in disabilities. Some came from social work or medical settings, bringing compassion but little classroom experience. Others were simply reassigned from general education because the principal thought they were patient, nurturing, or ready for an easier role near retirement.

As the field developed through the late 1970s and 1980s, universities began creating special education degree programs that focused on behavioral management, individualized instruction, and legal compliance. Special education teachers became trained professionals with specific credentials, expected to write Individualized Education Programs (IEPs), modify instruction, and collaborate with general education teachers.

Today, certification standards are far more rigorous, yet the reality is harder than ever. Special education teachers are pulled in every direction — co-teaching in general education classrooms, running small pull-out groups, attending IEP meetings, documenting progress, and providing accommodations for dozens of students with very different needs. Paperwork alone can consume more than half their work week.

Meanwhile, there is a national shortage of qualified special education teachers. Many schools rely on paraprofessionals (paras) to provide in-class support. These paras are often kind, patient, and dedicated, but few have specialized training in autism, learning disabilities, or emotional and behavioral disorders. In some classrooms, a single para may be responsible for several students at once, all with unique needs.

As a result, many students who are legally entitled to a set number of instructional or support “minutes” under their IEPs never receive them. Teachers are pulled to cover other duties, and the general education teacher is left trying to fill the gap, juggling 20 to 30 other students while also providing accommodations they were never trained to deliver.

Most general education teachers take only one introductory course on special education during college. It is often an inspirational overview about inclusion and empathy, not a hands-on course about how to implement an IEP, collect data, or write modifications that actually work.

To make matters worse, general education teachers and special education teachers almost never have time to plan together. The classroom teacher’s planning period is scheduled during the school day, but during that same time the special education teacher is usually attending IEP meetings, handling crises, or providing pull-out instruction. Without this collaboration, the co-teaching model — which depends on communication and joint planning — falls apart before it even begins.

Today’s Challenge

Now the pendulum has swung in the opposite direction. Many schools are so afraid of lawsuits or compliance violations that they push full inclusion, even when it is not appropriate. Students with severe behavioral, cognitive, or emotional challenges are placed in general education classrooms without the supports they need to succeed. Teachers are expected to differentiate instruction for every student, often without additional help.

The result is that no one gets what they truly need. Struggling students flounder, advanced students wait, and teachers — both general and special education — feel defeated.

Finding the Middle Ground

The history of special education is not a straight path from wrong to right. It is a story of overcorrections and unintended consequences.
We have moved from exclusion to inclusion, but we still have not achieved integration — the balance point where every child has access, support, and belonging.

The “good old days” were not good for everyone. But remembering who was left out helps us see how far we have come, as well as how far we still have to go.

Endnote: The Dark Legacy of Willowbrook

Willowbrook State School, located on Staten Island in New York, opened in 1947 as a state-run institution for children and adults with intellectual disabilities. It was built to hold about 4,000 residents but soon housed more than 6,000. Overcrowding, neglect, and a lack of funding turned it into a warehouse for people society preferred not to see.

Most residents lived in large wards with rows of metal beds, few clothes, and almost no personal space. Many were left unattended for hours, sitting or lying on the floor. Education and therapy were virtually nonexistent. Those who could have lived with family or in the community had no such option, since community-based programs did not yet exist.

In 1972, television reporter Geraldo Rivera exposed the conditions in a shocking investigative report called “Willowbrook: The Last Great Disgrace.” Hidden cameras revealed children rocking on the floor, smeared with filth, and overworked attendants struggling to care for dozens of residents at once. The report horrified viewers and forced the public to confront the reality of institutional “care.”

Even more disturbing, it later came to light that some residents were used in unethical medical experiments during the 1950s and 60s. Researchers intentionally infected children with hepatitis, claiming it was justified because the disease already spread rapidly inside the overcrowded facility.

The public outrage that followed helped fuel the disability rights movement and the deinstitutionalization of the 1970s and 80s. A class-action lawsuit in 1975 led to the closure of Willowbrook and the relocation of residents into smaller community homes.

Willowbrook finally closed in 1987, but its legacy remains a reminder of what can happen when people with disabilities are isolated, undervalued, or forgotten. Its exposure helped pave the way for the Education for All Handicapped Children Act of 1975 and, later, the Americans with Disabilities Act of 1990; laws that moved the country toward inclusion, accountability, and basic human dignity for all.

If you would like to see Geraldo Rivera’s documentary, Willowbrook: The Last Great Disgrace in its entirety, you can visit this non-affiliated link.

(NOTE: TRIGGER WARNING – this video is very disturbing. I remember when it was first shown back in 1972 it was very controversial to show such a disturbing video on television.)

1972. Willowbrook: The Last Great Disgrace, Geraldo Rivera’s original expose – YouTube

If you’d like to know more about what led me to write this story, please take a look at Why I Wrote “The Good Old Days – But For Whom” – Jan Mariet’s A Day in the Life .

We’ve Been Gaslit So Long, We Gaslight Ourselves

Why Chronically Ill People Don’t Always Recognize a Medical Crisis

When the pain first started, I thought, “It’s probably just another flare.”
I waited. I always wait. By the time I realized something was really wrong, I was already doubled over in pain, vomiting bile, and unable to stand upright.

That wasn’t self-neglect. It was conditioning; years of being told it can’t possibly hurt that much or comments that questioned if I might be exaggerating my symptoms. Chronic illness and the response we typically get from many medical providers teach us to second-guess our own pain.

The Pain Scale Paradox

Even the standard 1–10 pain scale trains us to minimize what we feel. With chronic illness, I’m never really below a five. But if I tell a nurse my pain is a ten, I’m often reminded that “ten is the worst pain imaginable” or “the worst pain you’ve ever felt.”

Well, I’ve had pain that would knock an elephant off its feet or make a quarterback sob in agony, but is this the worst pain I’ve ever felt? Not half! That’s the trap: when your baseline is already high, the scale stops meaning anything. What’s “severe” for most people has become our everyday normal. For many with chronic illnesses in a medical crisis, on a scale of 1 to 10, we are a 47!

When ‘Wait and See’ Becomes Dangerous

Over time, we start doing to ourselves what others have done to us: minimizing, rationalizing, waiting. With complex medical conditions, where multiple systems overlap or contradict each other, doctors often can’t pinpoint a single cause. The “wait and see” approach becomes the default. “Let’s try one thing and see how you react,” followed by another and another, until months, or even years, pass.

But chronic illness doesn’t work that way. Symptoms may be managed, but they rarely disappear. Some treatments help; others backfire. A few work for a while, then stop. Sometimes, treating one problem triggers another.

When that cycle repeats, both patient and doctor start doubting what they see. Physicians get frustrated with what they can’t fix and patients learn to keep quiet about what still hurts.

How the System Teaches Us to Doubt Ourselves

Many doctors, especially those unfamiliar with chronic pain conditions, grow impatient when the expected “miraculous recovery” doesn’t happen. Some take that frustration out on patients: labeling them “difficult,” limiting care, or implying they’re exaggerating.

We internalize that judgment. We stop calling, stop asking, stop trusting ourselves. We tell ourselves what we’ve heard and experienced so many times, “Maybe it’s not that bad.” We delay going in until it’s an emergency, or until someone else steps in and demands we seek help. Why do we wait? Because if we went to the hospital every time we were in extreme pain, we’d risk being seen as attention-seeking, or worse yet, as “drug-seeking.” Neither is true, but the fear of being dismissed keeps us silent.

Enduring Isn’t the Same as Being Numb

People with chronic illness are not desensitized to pain. We are simply practiced at functioning through it. It’s a survival mechanism, not a lack of sensation.

If an able-bodied person felt what we feel on an average day, they’d call an ambulance. We just keep going because we can’t spend our entire life rolling around on the floor, screaming and crying! Our mantra often becomes “what cannot be cured must be endured.” That endurance, though, blurs the line between “normal” and “crisis,” sometimes to the point that things become life-threatening or life-limiting before we realize what has happened.

The Aftermath of Self-Doubt

When things finally spiral, we look back in disbelief:“Why didn’t I call an ambulance? Why didn’t I go in sooner?” “Why didn’t I just that the hard stance and advocate for myself?”

But the real issue isn’t personal failure; it’s a healthcare culture that invalidates suffering until it’s life-threatening. That delay can mean intensive interventions, emergency surgeries, or critical care stays that could have been prevented.

A Call for Empathy and Change

If medical providers and indeed, our own friends and family, instead of labeling us complainers, oversensitive, or fixated, simply reassured us that we were right to seek help, it could change everything. Empathy is so powerful!

Encourage us to believe ourselves. Remind us that knowing our bodies is a strength, not an obstacle.

Unfortunately, our system rewards speed and limits access to medical providers and treatments. Many specialists can only see patients every six to eight weeks, even during severe flares. That “wait and see” approach leaves people suffering for months, sometimes years, before real help arrives. No one should have to live that long in pain.

Learning to Trust Ourselves Again

We’ve spent years downplaying our pain to make others comfortable. We’ve spent years being passed from one specialist to another, without resolution or even basic follow-up.

It’s easy enough to say, “You have to be your own advocate and demand help!” but it is harder to do when the system is stacked against you, and you risk having your medical care limited or even denied if you are seen as being too hyper-focused on your own illness or falsely accused of exaggerating your symptoms. But despite all of that, it’s time we learn to trust our bodies again, before they have to scream to be heard.

Why Traditional Pain Scales Don’t Work for Chronic Pain Patients

The Problem with Traditional Pain Scales

If you’ve ever sat in a doctor’s office and been asked, “On a scale from one to ten, how bad is your pain?”, you probably sighed before answering.

The standard 1–10 pain scale was designed for acute situations such as broken bones, surgical recovery, or sudden illness. It assumes a baseline of “no pain” and a temporary injury that can be fixed. For people with chronic pain, though, that’s not reality.

When your body hurts every day, the word “pain” stops meaning what it does for other people. Your five might feel like another person’s nine. You may function at a pain level that would send someone else to the emergency room, and still be told you’re exaggerating.

Because traditional scales focus only on intensity, not impact, they fail to show how pain actually changes your ability to think, move, and live.

What Makes a Chronic Pain Severity Scale Different

A Chronic Pain Severity Scale was designed to fill that gap. It doesn’t assume that ‘no pain’ is a chronic pain patient’s ‘normal.’ It recognizes that while many people with chronic illnesses are good at functioning with pain, their baseline is never ‘a zero.’

Instead of numbers without context, each level on this scale includes a clear description tied to function and daily activity.

Traditional Pain Scales	Newer Chronic Pain Severity Scales
Rates pain from 1–10, “worst imaginable pain.”	Links each number to how pain affects life—movement, focus, emotion, and independence.
Measures intensity only.	Measures intensity + interference + cognition.
Assumes a pain-free baseline.	Recognizes that many people always have background pain.
Useful for acute pain (injuries, post-op).	More accurate for chronic or neuropathic pain (CFS, fibromyalgia, rheumatoid arthritis, etc.).

For example:

A “10” on a Chronic Pain Severity Scale means “I’m in bed and can’t move because of pain.”
A “6” means “I think about my pain most of the time and must stop doing certain activities.”
A “3” means “My pain bothers me, but I can ignore it most of the time.”

This transforms pain measurement from guesswork into something functional and meaningful.

Why It’s More Accurate for Chronic Pain

It measures the lived experience of pain, not just the sensation.
Chronic pain isn’t only about how sharp or severe something feels, it’s about how much it limits life. The Chronic Pain Severity Scale captures that impact.
It reduces self-doubt and underreporting.
Many chronic pain patients minimize their pain after being told, “You can’t really be in that much pain.” A scale that validates the emotional and functional toll helps restore trust between patient and clinician.
It helps clinicians make better decisions.
Knowing that a patient can’t sleep, cook, or focus because of pain is far more actionable than a vague “7.” It helps guide treatment adjustments and therapy plans.
It tracks progress over time.
When improvement means doing more with the same pain level, a function-based scale shows real progress even if intensity hasn’t changed.

The Takeaway

Pain isn’t one-dimensional and measuring it shouldn’t be either.
For people with chronic or neuropathic pain, using a Chronic Pain Severity Scale offers language that matches reality; a way to describe not just how much it hurts, but how it affects your ability to live. Until healthcare systems adopt better tools like this one, chronic pain patients will keep having to translate their lives into numbers that don’t fit. The good news is, the conversation is finally changing, and scales that measure chronic pain are starting to take hold in the medical practices that deal with chronic pain pat

So, Have You Tried Not Being Sick? — Your Ultimate Guide to Surviving Ridiculous Medical Comments

When you live with a chronic illness, cancer, or any life-changing medical condition, everyone suddenly believes they have the cure you and your entire medical team somehow overlooked. Experience and actual medical knowledge do not seem to matter. People will offer advice that ranges from overly simplistic to completely unrealistic, yet they are convinced it will solve everything.

It doesn’t matter if they have no medical background at all. It doesn’t matter if their idea is impractical, unscientific, or deeply bizarre. They are absolutely certain it will work, because their cousin’s neighbor’s dog walker once tried something similar and “felt better.”

When you’re faced with these awkward questions, statements, and magical cures, you can try responding gently and with patience. But often the person handing out unsolicited advice only becomes more insistent. This is why humor can become your best tool, especially when logic and politeness have left the building.

Most of my suggestions start with gentle or educational responses for those who genuinely mean well but simply don’t understand. But for the ones who are fully committed to their inaccurate, intrusive, or downright ridiculous assumptions? You may need to pull out the sassier replies, or even the spicy ones.

So, let’s take a look at some of the seriously awkward things friends, family, coworkers, and complete strangers feel wildly comfortable saying, and the comebacks you can use when your last nerve has officially clocked out.

“I’ve known other people with your illness, and they don’t act this way!”

“Medical conditions affect different people in different ways.”
“Funny. I did not realize my disability needed your approval to be valid.”
“Wow. Please send me the handbook titled How People With My Illness Are Supposed to Act. Mine must have gotten lost in the mail.”

“You’re too young to be this sick!”

“Medical conditions can happen at any age.”
“Sorry. My body didn’t check my birth certificate before falling apart.”
“Trust me. I tried to schedule this for later in life, but my body declined the request.”

“It can’t be that bad!”

“I assure you that I’m not making this up or exaggerating. It is this bad.”
“You’re welcome to borrow my symptoms for a day and get back to me.”
“Great news. My body is officially cured because you said so.”
“You’re right. I just do this for fun.”
“Amazing. You assessed my entire medical reality in under ten seconds. Should I call you doctor now?”

“Well, you don’t have to make such a big deal about it!”

“I’m not trying to make a big deal of it. It just affects me more than it may seem from the outside.”
“I’m doing my best. Sometimes even small things feel big when you’re dealing with chronic illness.”
“Oh, sorry. I forgot you were the expert on how much my life impacts me.”
“My mistake. Next time I’ll run my suffering through your approval filter.”
“Trust me. If I could make it a smaller deal, I would have done that years ago.”

“At least you’re not dead!”

“True. But ‘alive’ and ‘living well’ are not the same thing.”
“I am grateful to be alive. But that doesn’t erase everything I’m struggling with.”
“I hear what you’re trying to say, but it minimizes what chronic illness actually feels like.”
“Being alive isn’t the same as thriving. I’m working on the thriving part.”
“Well, yes… but survival isn’t exactly my full list of goals.”
“I’m glad to be alive. That doesn’t make this easy.”
“Sometimes being alive is the hard part.”
“Thanks… I’ll add ‘not dead’ to my gratitude journal right between ‘gravity exists’ and ‘the sky is still up there.’”
“I know you mean that kindly, but that’s a pretty low bar for quality of life.”
“Wow, you’re right — I am alive. Let me go bake a cake in celebration of this very low bar.”
“Great, so we’ve established I’m not dead. Now let’s aim for ‘not miserable’ next.”
“Well, yes, but if ‘not dead’ is the goalpost, I think we need to raise our standards a bit.”
“True. But sometimes it feels like the warranty on my body has definitely expired.”
“Well, thank you for that life-affirming insight. I’ll be sure to remember it next time I’m in agony.”

“Drugs are bad. Drug companies are bad. You shouldn’t need to take medication! You should only use natural healing methods.”

“Natural methods can definitely be helpful, but for my condition, I also need the medications my doctors prescribe to stay stable.”
“I appreciate that you care, but my illness requires treatment that natural methods alone can’t manage.”
“Wonderful. I will let my immune system know it is supposed to heal itself with positive vibes and herbal tea.”
“Great plan. I will just go tell my chronic illness to stop being chronic.”

“You must have done something to cause this!”

“I know it might seem that way, but many medical conditions happen without anyone causing them.”
“I understand why people wonder that, but my doctors have been clear that this isn’t something I caused.”
“I try not to blame myself. My condition developed on its own, like many chronic illnesses do.”
“It’s natural to look for reasons, but in reality a lot of health issues aren’t caused by anything someone did or didn’t do.”
“Yes. I caused it by existing. Wild, I know.”
“Right. I woke up one day and thought, ‘You know what would be fun? A lifelong medical condition that makes me miserable!’”
“If people only got sick when they ‘caused it,’ hospitals would be empty.”

“You don’t look disabled!”

“That’s the tricky part. Not all disabilities show on the outside, but they still impact daily life.”
“I understand why you’d think that. Invisible disabilities can be hard to recognize.”
“I know it’s not obvious, but I manage symptoms that aren’t visible to others.”
“Good thing disability is not a fashion trend.”
“Amazing. I did not realize disabilities had a specific look. Is there a catalog I missed?”
“Hold on. Let me go put on my official Disabled Uniform so you can feel more comfortable.”
“Let me find my official ‘Disability Club Card’ in my wallet so you will be convinced.”
“That is the thing about invisible disabilities. You can’t see them… but we still live with them.”
“If looking disabled were required, half the population would be disqualified.”
“Well, you don’t look like someone who says ridiculous things to strangers… but here we are.”
“Shocking, right? Turns out appearances can be deceiving.”

“Autoimmune disorders aren’t real. The doctors made that up so they can get your money.”

“I know it can sound confusing, but autoimmune conditions are very real. They’re well-documented in medical research and labs.”
“I know people have different beliefs about medicine, but autoimmune disorders are confirmed through bloodwork, biopsies, and imaging, not just opinions.”
“Fascinating. I did not realize medical science was supposed to check with you before discovering things.”
“Amazing. My immune system attacking my organs must have missed the memo that it is not real.”
“Wild. My labs, biopsies, and specialists all disagree, but sure, random stranger, tell me more about your conspiracy theory.”

“Oh, I understand. My grandma had arthritis, too!”

“I appreciate you trying to relate. My condition is a bit different and affects more than just my joints.”
“Arthritis can be really tough. My condition has some similarities, but it also involves other symptoms that make it more complex.”
“I understand what you mean. My illness goes beyond typical arthritis, but I know your grandma must have struggled, too.”
“What I have is different from traditional arthritis, but I know both can be painful.”
“Ah, yes. The classic Grandma Comparison. Truly the gold standard of medical expertise.”
“Your grandma had arthritis. I have a chronic autoimmune disease. That’s where the similarities end.’”
“Fantastic. Did she battle systemic inflammation, nerve pain, organ involvement, and fatigue so bad she could not sit upright? Unless she did, then we are not talking about the same thing.”
“If your grandma’s arthritis was anything like this, she deserves a medal. And so do I.”

“I have some arthritis in my knees, but I don’t act like it’s the end of the world!”

“That’s great that your symptoms are mild. Mine are more widespread and come with additional complications.”
“I’m happy your arthritis isn’t too severe. My condition behaves differently and affects my daily life in bigger ways.”
“I hear you. My situation is a bit more complex than typical arthritis, which is why it can feel overwhelming at times.”
“Congrats on your knees. Unfortunately, my condition affects a little more than two joints on rainy days.”
“That is great for you. My body, however, chose the deluxe autoimmune destruction package.”
“If mild knee arthritis were my only issue, I would be doing cartwheels. Well… metaphorically.”
“I am thrilled your pain is small enough to brag about. Some of us are fighting battles you cannot see.”

“There are people who have it so much worse than you!”

“I know others struggle too, but that doesn’t make my challenges disappear.”
“Suffering isn’t a competition. We all have our own battles.”
“I can care about others and still acknowledge that this is hard for me personally.”
“Other people suffering does not make my pain any less painful.
“I did not realize pain was a competition. Do I get a trophy for participating?”
“Their suffering is regrettable, but it does not cancel out mine.”

“You should be grateful it isn’t worse!”

“I do try to stay grateful. It just doesn’t take away the challenges I’m dealing with.”
“I understand what you mean. I can appreciate what I have and still struggle with what’s difficult.”
“Gratitude helps, but it doesn’t erase my symptoms or make them easier to manage.”
“I am grateful it’s not worse. I’m also honest about what I’m experiencing now.”
“Gratitude does not magically cure illness but thank you for the spiritual advice you did not need to give.”
“Being grateful it is not worse does not make living with this any easier.”
“If gratitude could fix my body, trust me, I would be healed, sparkling, and doing backflips.”
“Gratitude does not cancel pain.”

“You’d be just fine if you’d lose some weight and exercise more!”

“Staying active is definitely helpful, but my condition is medical and needs more than exercise to manage it.”
“I do what activity my body safely allows. Unfortunately, my illness isn’t something that improves just from exercise alone.”
“A healthy lifestyle is good for everyone, but my condition is more complex than that. I follow the plan my doctor recommends.”
“Weight and exercise aren’t the cause of my illness. It’s a diagnosed medical condition that needs real treatment.”
“I move as much as I safely can, but my symptoms still need medical care. Lifestyle changes can help, but they don’t cure this.”
“Amazing. My specialists must have missed that during the decade they spent in medical school. Good thing you solved it in one sentence.”
“Thank you for the medical advice that ignores my actual medical condition.”
“I exercise as much as my body allows. Sadly, it did not fix being chronically ill, but please keep pretending it would.”
“My illness is complex. Your explanation is not.”
“I appreciate the thought, but my condition cannot be fixed by weight loss or exercise. It is a medical issue, not a lifestyle choice.”
“Movement and a healthy weight is good for everyone, but unfortunately it doesn’t cure autoimmune or chronic conditions. I follow my doctor’s guidance for what my body can handle.”
“Actually, my illness is not caused by weight. It is a diagnosed medical condition that needs real treatment, not just lifestyle adjustments.”
“I do exercise as much as my body safely allows. Unfortunately, my condition is not something that improves just from being more active. Activity can actually make it worse at times.”

“There is always something wrong with you… You always have something to complain about.”

“I talk about it because I am living with it every day. I am not complaining. I am trying to cope and be honest about my reality.”
“It may seem that way, but that is because my symptoms never really stop. I am doing my best to manage them.”
“I know it can sound like a lot, but these issues are ongoing for me. I share them so people understand what I deal with, not because I like complaining.”
“I am not trying to burden anyone. My health challenges are constant, and sometimes talking about them is part of how I cope.”
“I know it seems like a lot. I wish it were not. This is just the reality of living with a chronic condition.”
“Oh, absolutely. I wake up every morning excited to overwhelm you with a full report of my medical misery.”
“Yes, it is my favorite hobby. Some people collect stamps. I collect diagnoses.”
“You’re right. I do love spending all my energy narrating the thrilling adventures of a body that doesn’t function.”
“Of course. I schedule new symptoms just so I have something exciting to share with you.”
“Absolutely. My chronic illness exists purely for your entertainment.”
“Yes, I enjoy describing my medical issues almost as much as I enjoy having them.”

“You just need to have more faith and God will heal you!”

“I appreciate that your faith is important to you. Mine helps me too, but my condition still requires medical treatment.”
“Chronic illness is not a measure of anyone’s faith. I am doing my best with both faith and medicine.”
“Having faith is important to me, but it does not make my medical condition disappear. I trust my doctors and my beliefs to work together.”
“My illness is not caused by a lack of faith.”

“Why do you need a handicapped parking place? Those are for people who really need them.”

“I use it because my doctor determined that I qualify for it and need it to be as active as I am able. I would not use the space if I did not genuinely need it.”
“The state only issues these placards to people who truly qualify, and I am one of them.”
“Handicapped parking is for people who need it. My doctor and the state agreed that I do. That is why I use it.”
“I qualify for it medically. Not all disabilities are visible, you know..”
“I need it for medical reasons that are not always obvious from the outside.”
“I don’t discuss my private medical conditions with people I do not know. I have a valid placard, and that is all anyone needs to know.”
“I do not owe anyone personal medical details. I have the placard because I legitimately need it. Have a great day!”
“I understand the curiosity, but I do not share my medical information with people I do not know. My doctor and the state have already confirmed my need for a placard.”
“My health is private. I have the parking permit for medical reasons that my doctor and the state have approved.”
“My doctor and the DMV already handled the part where someone decides whether I need it. That someone was not you.”
“You should tell the state they issued my placard incorrectly. I am sure they will put you in charge immediately.”
“If invisible disabilities came with neon signs, we would not be having this conversation.”

“Why do you need so many medications?”

“Each medication helps manage a different part of my condition. They work together to keep me stable.”
“I know it looks like a lot, but each one plays a role in keeping my symptoms under control.”
“My condition is complex, so it takes more than one medication to manage it well.”
Because my body likes variety. It malfunctions in several exciting ways each day.”
“If I could fix everything with one pill, I promise I would.”
“My illnesses are overachievers, so my medication list has to keep up.”
“Great question. Which part of my medical file would you like me to fax you first?”
“If you had my symptoms, you’d ask for a pill organizer the size of a suitcase.”
“Let’s just say my immune system likes to keep things interesting.”

“What do you mean you can’t climb the stairs? You’re just being lazy.”

“I am not being lazy. My body simply cannot manage stairs safely. That is a medical reality, not a choice.”
“My ability to use stairs is a medical issue, not a topic for debate. I know what my body can and cannot do.”
“I do not discuss my medical limitations with people I do not know. I avoid stairs because it is unsafe for me, not because of laziness.”
“I do not need to prove or justify my physical limitations to anyone. If I could climb stairs safely, I would.”
“My limitations are medical, not motivational. I follow what my body and my doctor tell me, not what strangers assume.”
“If I were lazy, I’d pick something easier than battling my own body every day.”

“Why are you so negative all the time?”

“I am doing my best. Living with chronic illness is hard, and some days are heavier than others.”
“I am not trying to be negative. I am just being honest about what my body puts me through.”
“It may sound negative to you, but it is simply my reality.”
“I talk about my health because I live with it every day. That is not negativity. That is honesty.”
“I do not get to take breaks from my health issues, so the topics I talk about reflect the life I live.”
“Oh absolutely. I wake up every morning excited to disappoint the positivity police.”
“If you experienced my symptoms for a week, you’d understand my tone perfectly.”
“I am reacting to real problems. My body is not exactly showering me with inspirational quotes right now.”
“You’re confusing negativity with honesty. I do not have the luxury of pretending everything is fine.”

“Why aren’t you cured yet?”

“Because my condition is chronic. It does not have a cure, at least not yet.”
“I wish it were that simple. My condition is chronic, and management is the goal. There is no cure for it…yet.”
“Because chronic illnesses do not magically go away.”
“Trust me. If there were a cure, I would have Amazon-primed it to my house yesterday.”
“I am still waiting for my body’s warranty department to call me back.”
“Apparently, my illness missed the memo about resolving itself quickly.”
“I would love a cure. Unfortunately, my condition responds to reality, not wishful thinking.”

“It must be nice to stay home and relax all day.”

“I know it might look that way from the outside, but most of my time at home is spent managing symptoms and trying to get through the day.”
“I understand why you’d think that, but resting at home is something my body needs, not something I choose for fun.”
“I do spend a lot of time at home, but it’s because my health requires it, not because it’s relaxing.”
“Yes, nothing says relaxation like pain, fatigue, and a stack of medical appointments.”
“If this is relaxing, I would hate to see what you consider stressful.”
“Sure is. I especially enjoy the part where my body forgets how to function.”
“Yes, I just love hibernating at home and missing out on all the fun!”
“It is nice. I’ve had so much time to perfect giving myself injections, and keeping up with all my medications and doctors’ appointments is just the icing on the cake.”
“Totally. My body falling apart in the comfort of my own home is the height of luxury.”
“Oh, it’s fabulous. I wake up every morning wondering which symptom will cancel my plans today. Very relaxing.”
“Yes, I am living the dream. Who needs hobbies and a life when you can lie on the couch all day in pain?”

“Only people in wheelchairs are supposed to use these toilets!”

“Accessible bathrooms are for anyone with a disability, not just wheelchair users.”
“The sign says ‘accessible,’ not ‘wheelchair only.’ I am using the one that is safest for me.”
“Good news. Accessible toilets are for more than one type of disability. Surprising, I know.”
“Wow. I had no idea you were the bathroom police. Do you have a badge?”
“Fascinating. The sign says ‘accessible,’ not whatever you personally imagine.”
“If only my disability were as obvious as your confidence in being wrong.”

“Have you tried meditating?”

“Meditation helps me manage stress, but it doesn’t treat the medical parts of my condition.”
“I do meditate sometimes. It’s helpful, but it can’t replace actual medical treatment.”
“I’ve tried it. It’s good for my mind, but it doesn’t change the physical symptoms.”
“Meditation is part of my self-care, but it isn’t a cure for my condition.”
“Yes. I meditated so hard my chronic illness packed its bags and left. Oh wait… no it didn’t.”
“Absolutely. I close my eyes, focus on breathing deeply, but somehow my immune system still keeps doing whatever it wants.”
“Yes, I’ve tried meditating. Unfortunately, my body never got enlightened enough to stop being sick.”
“Meditation is great. It just does not happen to cure inflammation, joint destruction, or organ issues.”
“Oh, totally. I sit quietly, breathe deeply, and my immune system still acts like a toddler with scissors and a tube of lipstick.”

“Have you tried functional medicine?”

“I’ve looked into it, but my condition needs medically proven treatments to stay stable.”
“Some people find it helpful, but my illness requires the care plan my specialists recommend.”
“I appreciate the suggestion. For my condition, though, functional medicine on its own isn’t enough.”
“I’ve explored different approaches. My doctors and I have found that evidence-based treatments work best for me.”
Yes, and shockingly, my chronic illness did not vanish after a $300 supplement panel.”
“I tried it. My disease was not impressed by celery juice and personality quizzes.”
“Amazing idea. Let me swap my specialists for someone who thinks inflammation is caused by my ‘chakra alignment.’”
“I looked into it. Turns out my illness needs actual medicine, not a wellness podcast.”
“Yes, I tried it. My autoimmune disease said, ‘Cute, but no.’”

“Have you tried yoga?”

“Yoga can be helpful for some things, but it doesn’t address the medical parts of my condition.”
“I’ve tried yoga before. It helps a little with stress, but it doesn’t change my underlying symptoms.”
“I appreciate the suggestion, but my body just can’t safely do all the movements, so I follow what my doctor recommends instead.”
“Yes, I did yoga. My joints applauded by dislocating themselves.”
“Great idea. Let me fix my autoimmune disease with glorified stretching.”
“I love yoga. It helps my stress. It does not, however, rewrite my medical diagnosis.”
“Sure. I did a downward dog, but my immune system kept doing a downward spiral.”
“Yes, I tried yoga. My chronic illness did not find it nearly as life-changing as Instagram promised.”

“Why don’t you try ivermectin?”

“I know people talk about it a lot, but my doctor has explained that it isn’t safe or effective for what I’m dealing with.”
“I appreciate the suggestion. My illness requires different medications that are designed for my diagnosis.”
“I’m following the treatment plan my medical team has created. Ivermectin isn’t part of what they consider safe or effective for me.”
“Sure, I’ll ask my doctor if I should take a horse dewormer for my autoimmune disease. I’m sure he’ll agree.”
“Right, because when my immune system malfunctions, obviously the solution is livestock medication.”
“Great idea. Let me just trot over to the barn and ask a horse what dosage they recommend.”
“Yes, I considered it. My chronic illness politely declined the offer to be dewormed.”
“If ivermectin fixed chronic illness, rheumatologists would be out of business, and the Tractor Supply store would be a hospital.”
“Amazing. You solved my complex medical condition with a farm supply product.”
“No thanks. I prefer medicine meant for humans.”

“You should try intermittent fasting!”

“Intermittent fasting can help some people, but it doesn’t address the medical issues behind my condition.”
“I appreciate the idea. My illness needs a treatment plan that’s a bit more specific than fasting alone.”
“I’ve looked into different approaches, but fasting isn’t something my body can safely handle with this condition.”
“Oh, perfect. I will just starve my chronic illness into behaving.”
“Great idea. Let me fix my medical condition with a diet trend from a TikTok wellness coach.”
“Sure. I’ll just tell my cells to wait until my eating window to malfunction.”

“If you just gave up all sugar, your cancer would go away.”

“I know people mean well when they suggest that, but cancer can’t be cured by eliminating sugar. My doctors are managing it with real medical treatment.”
“Diet can support my health, but it can’t cure cancer. I’m following the treatment plan my oncology team recommends.”

“I appreciate the suggestion. Unfortunately, cancer is much more complex than diet changes alone.”

“Eating well is helpful, but my doctors have explained that cutting sugar isn’t a cure for cancer
I’ve looked into many approaches, including dietary ones. Unfortunately, no diet can cure cancer. My doctors are managing it with real medical care.”
“If only it worked like that, my oncologist could retire and open a bakery.”
“I gave up sugar once. My cancer didn’t notice, but I got very cranky.”
“Imagine if curing cancer were as easy as skipping cupcakes. The medical world would be so relieved.”
“Amazing. My oncologist spent a decade in medical school when all she needed was a sugar-free cookbook.”
“Right, because cancer cells are notoriously afraid of fruit snacks.”

Disability Benefits Myths & Facts

Here’s the Reality of What Insurance & Disability Benefits Cover for Wheelchairs, Ramps, Home Modifications, and Other Medically Necessary Items

There is something that most people do not understand about disability benefits in the US. Nearly every part of daily life becomes more expensive, more complicated, and harder to access. Yet the public continues to believe that disabled people receive everything for free. They imagine motorized wheelchairs arriving at no cost, ramps magically appearing on porches, and bathroom remodels being covered because a person “needs them.” They believe Medicare, Medicaid, or disability benefits pay for vans, adjustable beds, and even pools or hot tubs. None of this is true.

Most people have no idea how limited coverage is for mobility equipment and accessibility needs. There are strict criteria, long waiting periods, and very narrow definitions of what is “medical necessity.”

The gap between what the public believes and what disabled people actually live through is enormous.

Here is the real picture:.

1. Wheelchairs Are NOT Free

Medicare, Medicaid, and private insurance all follow restrictive rules.

Manual wheelchair coverage

Medicare will only cover a basic, “standard” manual wheelchair if the patient cannot walk inside their home and cannot use a cane or walker instead. It must be medically necessary inside the home, not outside. If someone can walk short distances inside (even painfully or with difficulty), Medicare often denies the wheelchair.

Power wheelchair coverage

This is where most of the myths come from.

To qualify for a power wheelchair:

You must be unable to use a cane, walker, or manual wheelchair.
You must need the chair inside your home, not just in the community.
Your home must have hallways and doorways wide enough for safe use.
You must be able to operate the chair safely.
Your doctor must document everything extremely precisely.

If you can walk a few steps indoors or use a manual chair indoors, Medicare usually denies a power chair. If your mobility problems occur mostly outside of the home, then Medicare denies it automatically, because Medicare only pays for equipment used inside the home.

Specialized chairs (tilt, recline, custom seating)

Insurance often denies these even when medically necessary for pressure relief, spinal deformities, or severe disability. Many patients must pay thousands out of pocket.

2. Insurance Only Replaces Wheelchairs Every 5 Years (Sometimes Longer)

Most insurers, including Medicare, use a 5-year “useful lifetime” rule.

If your wheelchair breaks or no longer fits your body, they can still refuse replacement until the 5-year mark.
If you lost weight, gained weight, or your condition worsened, they may try to “repair” instead of replacing it.
Repairs require approval, documentation, and sometimes months of waiting.

People go without mobility equipment for long periods because of this.

3. Upgrades, Comfort Options, or Safety Features Are Usually NOT Covered

Insurance typically does not cover:

Lightweight frames
Recline or tilt systems
Custom cushions
Side guards
Anti-tip bars
Headrests
Battery upgrades
Off-road wheels
Seat elevation systems

If you want a wheelchair that actually fits your body or your lifestyle, you usually have to pay for it.

4. Ramps, Home Modifications, Bathroom Remodels, and Accessibility Improvements Are NOT Covered by Medicare

This is one of the biggest myths.

Medicare does not pay for:

Ramps
Stair lifts
Widened doorways
Roll-in showers
Bathroom remodels
Kitchen modifications
Grab bars
Lowered countertops
Porch lifts
Home elevators

Medicaid may cover some modifications in certain states through waiver programs, but these:

Have long waitlists
Cover only minimal/basic work
Do not cover full remodels
Often require the family to pay part of the cost
Are not guaranteed
Are extremely limited in funding

To even be eligible for Medicaid in most states, a disabled adult must meet extremely strict financial rules. This usually means having no more than $2,000 in countable assets, often called the ‘$2,000 asset limit.’ This includes money in savings, checking, or any other accessible resources.

Living with so few resources forces disabled people on Medicaid to remain far below the poverty line. Most accessibility modifications, adaptive equipment, and home upgrades are not covered, so people must pay out of pocket or simply go without.

5. Adjustable Beds Are NOT Covered

Medicare considers adjustable beds “convenience items.”

Coverage is limited to a VERY basic hospital bed frame in a twin bed size if you meet strict criteria. Anything more advanced (adjustable bases, memory foam, reclining beds) must be fully self-paid.

6. Wheelchair Vans Are NOT Covered

Insurance does not pay for:

Wheelchair-accessible vans
Modifications like ramps or lifts
Hand controls
Transfer seats

These typically cost:

$65,000–$90,000 for a new basic “no frills” converted van
$20,000–$40,000 to convert an existing van
$1,500–$5,000 for hand controls or transfer seats

Most disabled people cannot afford this. That is why wheelchair van fundraising campaigns are so common.

7. No, Insurance Does NOT Pay for Jacuzzis or Swimming Pools

Some people genuinely believe disabled people get:

Hot tubs
Saunas
Swimming pools
Jacuzzis
Spa equipment

for free.

Insurance does not cover any of these, even when they are medically recommended for pain, muscle spasms, or paralysis. A doctor’s prescription does not change anything.

8. “Disability Will Pay for It” Is a Total Myth

Government disability payments:

Are NOT tied to actual needs
Do NOT increase because of medical equipment needs
Are NOT based on medical costs
Average $1,300–$1,500 per month for SSDI, and that is the total amount the disabled person gets to live on – for groceries, rent, utilities, insurance premiums and co-pays — everything!
Often barely cover rent

Disability checks do not pay for:

Wheelchairs
Ramps
Home modifications
Accessible vehicles
Hot tubs
Beds
Walk-in tubs
Medical equipment
Caregiving
Housecleaning
Food delivery
Air purifiers
Mobility aids
Bathroom remodels
Adaptive clothing

People truly believe disabled people get all this for free. In reality, disabled people pay thousands out of pocket every year and often go without simply because they can’t afford essential items.

These Myths Protect the System, Not Disabled People

As long as society believes disabled people are getting free equipment, free home renovations, and free vehicles, there will be no pressure to change the system. These myths allow lawmakers and insurance companies to avoid responsibility while millions of disabled people struggle in silence.

Understanding the truth is the first step. Demanding better is the next. When our society denies access to mobility, accessibility, and independence we choose to neglect our most vulnerable members.

Disabled people deserve more than myths. They deserve systems that support them, equipment that fits, homes they can live in, and lives where basic accessibility is not a luxury.

Real change begins when we stop believing the myths and start listening to the people who live this reality every day.

Any Life Can Change in an Instant

Poverty and disability often go hand in hand. Most people have no idea how fast a life can collapse. One accident. One illness. One diagnosis. That is all it takes to go from “everything is fine” to “nothing is secure.”

People assume disability is rare or something that happens to “other people.” But disability is the only minority anyone can join at any time.

All it takes is the wrong day, the wrong fall, the wrong medical crisis, the wrong gene. It can happen to anyone due to no fault of their own. It can happen in a moment and change your life forever. It also changes the lives of your loved ones.

Some of us are born into disability and never get the chance to build a financial cushion or to have financial stability. Others work their entire lives only to have their world and finances overturned in a matter of weeks. No one is immune.

Yet disability does not only cause poverty. For many people, disability creates an entire life lived in a constant state of financial limitation. When you live with a condition from birth, or from childhood, or even from early adulthood, you often never reach the earnings, promotions, or savings that nondisabled people take for granted.

You may start adulthood already limited in what jobs your body can tolerate. You may struggle to attend college, complete training programs, or hold long hours. Treatment schedules and medical crises interrupt careers again and again. Even when you work as hard and as long as you possibly can, your earnings generally stay low and your expenses stay high.

This means poverty is not only a consequence of disability, it is often the lifelong companion of disability. You spend years walking a tightrope without a safety net. You make sacrifices most people never see or understand. You learn to live with trade-offs in every decision: medication or groceries, mobility equipment or rent, a medical appointment or a bill payment.

And still, the systems that are supposed to protect people in crisis rarely work as promised. While the public likes to imagine that safety nets are available, accessible, compassionate, and functional, they are not.

Most assistance programs require people to be at complete financial collapse before they can even apply. You must lose nearly everything: your savings, your job, your independence, before you become “eligible.”

So, while you are trying to figure out what is wrong with your body, navigating months-long waits for specialists, undergoing tests and treatments, learning how to live with a new diagnosis, and managing pain, fatigue, or cognitive symptoms, you also have to become a financial strategist, an advocate, a legal researcher, and a paperwork expert. Many disabled people say: If we were this healthy and capable, we would just go to work. But of course, we are not able to do that. We are trapped in the process. We are too unwell to work, yet somehow expected to be well enough to complete the complicated maze of forms and documentation that might actually get us some help.

Losing your health can instantly wipe out your finances, your contingency plans, and your support network. Lifelong friends drift away. Income disappears, but your bills do not. If anything, your bills increase with the added strain of increased medical costs, adaptive equipment, treatments, hospitalizations, surgeries, medications, and so forth.

Meanwhile, you are expected to perform at the level of a trained analyst. You collect documents, prove disability through multiple specialists, attend evaluations, file appeals, and navigate systems that even lawyers struggle to understand.

This is the reality for millions.

The truth is simple. A society that ignores the needs of disabled people is a society unprepared for its own future. Disability is not a “their” issue. It is an “everyone’s” issue. And sooner or later, it touches every family.

We need robust social supports, not as charity, but an infrastructure that truly provides what people need. Not as handouts, but as recognition that any life can change in an instant.

Getting Disability Isn’t Easy

Getting Disability Isn’t Easy; Living On Disability is Even Harder

Disability benefits are lower than most people believe.
They are harder to get than most people believe.
Fraud is far lower than most people believe.
And the amount of evidence you need just to be considered is far more than most people believe.

What most people never see is the long, exhausting process behind the scenes. The system is extraordinarily complicated. You must have multiple medical reports from several different doctors, all confirming that you are unable to work. Getting these reports costs a great deal of money, and it also takes a tremendous amount of time. Doctors’ appointments can take weeks to months to schedule. Many patients must then wait weeks to months to see specialists. Those specialists order tests and imaging that may require even more waiting. Some doctors will not make a final determination until you complete months of physical or occupational therapy. All of this is required just to build the months or even years of documentation needed for a disability claim.

You will also find that many doctors are hesitant to put in writing that you are “unable to work,” because doing so requires extensive paperwork that they are almost never compensated for. Even after all this, the disability office often overrules the doctor’s diagnosis or opinion. When that happens, the disabled person must appeal the decision, and many must pay out of pocket for additional experts to confirm what their original doctors already stated.

On top of this, you must prove that you have tried every reasonable treatment that might allow you to return to work in any capacity and that those treatments have failed. And you must do all of this while you are not working and have no income at all. Many disabled people spend years filing appeals, attending evaluations, and appearing before Administrative Law Judges. If they are denied, they must start the entire process again. And again.

There is another part almost nobody talks about.
During the first six months you are unable to work, you receive no financial support unless you purchased your own private short-term disability plan before you ever became disabled. If you had any medical history at all, you were probably not eligible to buy one. During this same six-month period, unless you are covered under a spouse’s insurance plan, you must pay for your own health insurance premiums or pay out of pocket for every medical visit, test, and treatment. People who have to rely on Medicaid or a very basic, low-cost plan often cannot access top-tier medical professionals. The wait times to see available providers are much longer, and many specialists simply do not accept those plans. Yet these specialists are the very people you must see in order to document your condition and prove that you are unable to work.

Government disability benefits based on your work history are not a handout. You pay into these programs every single payday of your working life, whether you are part-time or full-time. You cannot even apply unless you have enough work credits, meaning you have been significantly employed for the majority of your life.

But even if you qualify, the income is shockingly low.
Most people who are approved for disability receive about 40 percent of their former earnings, and they still have to pay federal income taxes at the end of the year.

Health insurance creates another huge burden.
If you qualify for disability based on your work history, you must provide and pay for your own health insurance for the first 24 months after you have been declared ‘unable to work’ (in addition to the first 6 months after you had to stop working.) Only after that do you become eligible for Medicare.

And even when Medicare begins, it is not free. A disabled person must still pay the monthly Medicare Part B premium, deductibles, and co-pays. Most also have to buy a Medicare supplement and a prescription drug plan, because Medicare alone does not cover enough to keep them safely insured.

Typical costs for a disabled person on Medicare, under age 65 (per month):
• Medicare Part B premium: around $185–$200
• Medicare Part D drug plan: often $80–$100 or more
• Medigap (for example, Plan N): commonly $300–$600+ depending on state and health
• Co-pays, deductibles, uncovered medications: $50–$200+

For many disabled people under 65, these are not hypothetical numbers. For example, my own current costs are $94 per month for Part D and $530 per month for a Medigap Plan N policy, in addition to Part B.

This does not even include the expensive co-pays on many medications. Even with a drug plan, some disabled patients require medications that cost more than $250 per month, and that is with coverage. Because you are on Medicare, you are no longer eligible for the low co-pay programs that many pharmaceutical companies offer for high-cost medications. It is far more common than people realize for someone on disability and Medicare to need medications that cost more than their entire monthly disability payment. Many disabled people are forced to go without necessary medications that keep them alive. This leads to more hospitalizations, more medical complications, a worsening of their overall health, and eventually, death.

The government and the media rely on the public not understanding how difficult, expensive, and inaccessible this system really is. When the public believes disability benefits are easy to get or generously funded, it removes pressure to fix the system. It allows lawmakers to avoid accountability while millions of disabled people struggle in silence, financially punished for medical conditions they never chose. Nothing changes because most people simply have no idea how bad the system truly is.

Why We Stay Silent

Why So Many of Us Keep Chronic Pain to Ourselves

Chronic pain is one of the few experiences that can reshape every part of a person’s life. It affects our bodies, routines, identities, moods, and sense of belonging. Yet many of us choose to keep most of that struggle hidden. We grit our teeth, put on a face that looks “fine”, and move through the world as if our bodies are not screaming at us. People often assume we stay quiet because we are private, strong, improving, or simply used to it. The truth is far more complicated.

There are many reasons that people with chronic pain learn to keep their pain to themselves. Some are protective. Others come from long years of being misunderstood or receiving negative reactions when we share what we are going through.

1. The discomfort of others

When we talk about pain, people look worried or awkward. They shift in their seats. They reach for solutions that do not exist. They want to fix something that cannot be fixed, which only increases their discomfort and our guilt. Eventually, we start hiding our truth to protect them. Their discomfort becomes our responsibility, even though it should not be.

2. Friends want to help, but they do not know how

Most people are wired to respond to pain with action. They offer treatments, supplements, diets, or miracle stories from someone they know. These suggestions are well-intentioned, but they are often exhausting. Chronic pain does not respond to quick fixes. It does not disappear because someone “means well”. Many of us stay quiet because we do not have the energy to manage someone else’s panic, worry, or problem-solving when we can barely manage our own lives.

3. Fear of losing people

This fear is real. Many people back away once they realize how complicated our health is. Not because they are unkind, but because they feel helpless or overwhelmed. They do not know what to say, so they say nothing. They do not know how to show support, so they quietly disappear. Silence becomes a way to protect ourselves from being abandoned again.

4. Protecting our social lives

We do not want to be “the sick friend.” We do not want to be the person who makes every outing feel heavy. We do not want to see pity in someone’s eyes. So we hide the limp or swollen fingers, swallow the tears, and pretend we are functioning better than we are. When we stay silent, people seem more comfortable around us. Silence keeps the social doors open.

Silence may protect us, but it comes with its own price.

1. It is not authentic

When we hide our pain, we silence parts of ourselves in order to keep others comfortable. It creates a version of us that is not quite real. Over time, this becomes isolating, and we are left wondering whether people are friends with us or friends with our carefully managed persona.

2. It damages relationships without meaning to

When we act “fine”, our friends believe us. They assume things must not be too bad. So when we end up in a crisis or the hospital, they ask, “Why didn’t you tell me?” They feel blindsided, shut out, and unsure if we trusted them. They do not understand that we were trying to protect them from worry, helplessness, or fear.

3. We carry the weight alone

A deep loneliness grows when your outside world does not match your inside world. Carrying chronic pain in silence feels like dragging a heavy backpack that no one else can see. You are exhausted, but you feel guilty asking for help because everyone assumes you are doing well.

4. We miss the chance to be supported

Not all friends run. Some stay. Some want to know how we really are. Some are capable of compassion instead of panic. Silence keeps us from discovering who those people are.

This is where many of us get stuck. If we talk about our pain, we might lose people. If we hide it, we lose ourselves.

There is no simple solution. Every person with chronic pain learns to walk a tightrope between honesty and self-protection. Some days we share. Some days we stay silent. Some days we search for the impossible balance between the two.

If you are expecting a profound, life-changing ending here, you will be disappointed. We believe people should accept us as we are, listen to our worries and pain, console us without trying to “fix” us, and remain patient and kind at all times. In a perfect world, they would. But humanity is not built that way.

Everyone’s patience and compassion have limits. Friendship is about both giving and receiving, and those of us with chronic illness often feel the weight of being the one who needs more than we can give. The other half of the friendship can feel the strain of giving more than they expected, and indeed, more than they have the desire or energy to give.

How many of us enjoy hearing the same struggles repeated day after day? How many of us like adjusting every plan so that one person can be included? How many of us stay patient when a friend cancels at the last minute, even when the reason is valid? All of us have limits. Once those limits are reached, we pull back.

So why do we expect anything different from the people we care about? ‘s not realistic to believe that friendship remains strong when one person is always doing the heavy lifting while the other cannot. Relationships strain under that imbalance. It does not mean anyone is unkind. It simply means everyone has a threshold, including the people we hope will stay by our side forever.

So, we learn to walk the line between expressing our pain and protecting the friendships we value. We speak when we can. We stay silent when we must. We do our best to find a way to belong without losing ourselves.

And in the end, maybe that is the real truth of living with chronic pain; there is no perfect answer. There is only doing the best we can with the body we have, holding on to the people who choose to stay, and allowing ourselves to be human in a life that is far more complicated than most people will ever understand.

My Disabilities Do Stop Me

When I was a young adult, I used to say things like, “Yes, I have a disability, but I never let my disability stop me.” I worked twice as hard to make sure it never did. I pushed myself through pain and exhaustion, determined to prove that I could keep up. I smiled through agony and hid how much it cost me, just so I could say I didn’t “let it stop me.”

Later, after my 19th reconstructive surgery just to keep walking, I softened my words. I’d say, “I have a disability, and while I can’t always do things the way everyone else does, I’ll still get it done.” But those “other ways” often meant forcing my body to do things it wasn’t capable of anymore, causing new injuries, flare-ups, and setbacks I pretended didn’t exist.

Now, decades later, after two life-altering battles with cancer, the loss of several internal organs, malnutrition from a chronic GI condition, and spinal damage that leaves me physically fragile, I’ve stopped pretending. I can no longer claim that I can do everything a more able-bodied person can. My medical conditions have completely taken over my life.

My disabilities do stop me. They control when I can shower, walk, eat, talk, and move. They decide if I can work, socialize, or even get out of bed. They’ve taken over parts of my life I once thought I could always control. They have humbled me in ways I never would have imagined.

And you know what? It isn’t giving up. It isn’t a lack of character. It isn’t a lack of faith, or courage, or stick-with-it-ness. It’s honesty, pure and simple.

Telling someone “Don’t let your disability stop you!” isn’t kind. It isn’t encouraging. It’s pressure disguised as support. It erases the truth that some disabilities do stop us. It suggests that the only valuable disabled person is one who keeps producing, achieving, and pretending not to be disabled.

My disabilities do stop me. They always will. They’ve reshaped my life, but they haven’t erased it. They don’t stop me from being human, from loving deeply, from creating meaning in the ways I still can. They haven’t stopped me from finding joy in small places, showing courage, or maintaining resilience through incredibly difficult circumstances.

As my life and abilities continue to change, I keep learning how to adapt. It isn’t easy, and it often brings frustration, confusion, and moments of utter helplessness. But each time I rebuild, I’m reminded that strength isn’t about defying my limits, it’s about living honestly within them.

True resilience isn’t pretending nothing can stop you. It’s finding purpose, grace, and self-worth even when something does.

Medical Trauma is a Real Thing

Medical trauma is more than just feeling nervous about doctor visits. It’s the kind of fear that settles deep in your body after being hurt, ignored, or dismissed by the very people you were supposed to trust. It’s sitting in the waiting room with your stomach in knots, remembering the times you were told your pain was “just stress,” or that your exhaustion was “just anxiety.” It’s hearing that everything would be fine if you lost a little weight, slept more, or just tried harder. And then being sent home with no real help for the symptoms that are still controlling your life.

If you are a woman, that fear often runs even deeper. It can come from having reproductive procedures done without any anesthesia or pain relief, like an IUD placement, an endometrial biopsy, a colposcopy, a cervical cauterization, or even certain childbirth interventions. You are told it will be quick, maybe a little uncomfortable, and then you are left gasping in pain, feeling betrayed and humiliated for reacting honestly.

Medical trauma teaches you that seeking help can sometimes make things worse. Your body remembers every time you were dismissed, and that memory shows up as anxiety, nausea, or panic every time you need to go back. It’s real. It’s painful. And it changes how you see yourself, your body, and the entire medical system.

You are not weak for feeling afraid. You are not dramatic for hesitating to make another appointment. What happened to you mattered, and it left an imprint. Healing from medical trauma takes time, safety, and people who truly listen. You deserve care that honors your pain instead of dismissing it, and you deserve to feel safe in your own body again.

If this resonates with you, you’re not alone. Many of us carry this quiet fear, and talking about it is the first step toward reclaiming our trust and our voice. If you can relate to this article, please leave a comment below.

When Accessibility is Treated Like an Option

Ableism runs so deep in our culture that many people don’t even notice it. We’re taught to believe that with enough grit and determination, anyone can “overcome” anything, as if disability is simply a matter of effort or attitude.

But that belief is dehumanizing. It assumes that disabled people fail because they didn’t try hard enough. It ignores the truth that most disabilities are dynamic (they change over time) and invisible (they aren’t always seen). it erases the fact that the world itself is built to exclude us, often by people who do not even realize they are doing it.

It often seems that our buildings, businesses, and public spaces are designed around the idea that accessibility is optional, a feature that can be added later if someone happens to complain. Call a restaurant, museum, or mom-and-pop shop and ask if it is accessible, and you might hear, “Well, once you get inside, it is.” But if you cannot get inside, it is not accessible. Period.

Walk into a restaurant and look for the accessible restroom, if you can even reach it. Too often, the hallway leading to it is packed with high chairs, extra tables, and boxes. When you mention it, someone says, “Oh, we could move those things if you need to get by,” not realizing that they are part of the problem. Accessibility that requires asking for help is not accessibility; it is dependence disguised as kindness.

The same thing happens in stores. Dressing rooms marked as accessible are often used as storage closets, piled high with merchandise or missing the bench or chair that makes them usable. It is treated as harmless, an afterthought, because people assume no one really needs it. But for someone who does, it sends a clear message: you do not matter enough to plan for.

And then there is the language. When a disabled person simply lives their life, goes to work, raises a child, cares for a loved one, or shops for groceries, they are often called “inspirational.” But that is not really the complement it seems to be. It turns a real, complex person into a symbol, a feel-good story for others. It celebrates the idea of “overcoming a devastating disability” instead of questioning why the world is built to make disabled lives harder in the first place.

Accessibility is not about convenience. It is about dignity, equality, and respect. A ramp, a clear hallway, a working door button, an open dressing room — these are not luxuries. They are the difference between being included and being shut out.

If we want a truly inclusive world, we have to stop congratulating people for “trying harder” and start demanding systems, spaces, and attitudes that stop making it harder in the first place.

When Nothing is Simple

The Hidden Reality of Being Medically Complex

Having to make medical decisions on a frequent basis is exhausting, not just physically but mentally and emotionally. Even after your doctor explains your options and you have done your own research, the uncertainty does not go away. You still lie awake wondering, Will this treatment help me or harm me? Will it trigger a flare or cause damage I cannot undo? What is the cost of not treating my condition? Will it cause me to become non-functional? Is the treatment worse than the disease?

When you have multiple conditions, the anxiety multiplies. You start wondering if the medication for one illness will interact with the treatment for another, or if managing one condition will cause the other to spiral. You sit across from one specialist who is an expert in one disease but does not really understand another major diagnosis you have. The label “medically complex” often makes doctors hesitant to treat you with the same confidence they might have if you only had one condition.

Too often, there is little or no research on how multiple conditions interact, and specialists hesitate to offer a full range of treatment options because of this. They cannot answer your questions because they simply do not know. You are left trying to piece together advice from different doctors who rarely talk to each other, hoping their recommendations do not cancel each other out or make things worse. When lab results show a new issue, neither you nor your doctors can be certain which treatment caused it, or whether it is an entirely new problem.

Often, you have to decide which condition is most pressing to treat. Can you live with the challenging symptoms of one condition in order to focus on a more life-threatening one? When a condition is clearly life-threatening, it is easier to know it must be treated with priority. But sometimes, the choice is not so clear. You may find yourself having to decide whether to treat the condition that causes life-altering pain or the one that is quietly damaging one or more internal organs. Which is more important for your quality of life right now? Which could cause the most harm long-term if you delay?

These are nearly impossible questions to answer. There is often no research to guide you and multiple doctors may give conflicting advice, each shaped by their own specialty and perspective. You are left to make decisions without the data or information needed to make an informed choice, and the resulting anxiety—both while making the decision and long after it is made—can be overwhelming. Did you make the best decision? Should you have chosen differently? You will never have certainty.

If you have a rare condition, one that only a handful of specialists in the country truly understand, it adds another layer of fear. You may have to travel long distances or wait months for an appointment, knowing that even a small misstep could have serious consequences. Sometimes you realize you know more about your own illness than most of the people treating you.

Medications and treatment regimens for rare diseases are often incredibly expensive, simply because a drug made to treat only 20,000 people costs more to produce and has fewer researchers working on it than one created for a widespread condition. A rare disease has only a small “market,” while something that affects millions of people is far more profitable for drug and research companies. That leaves those of us who are medically complex with few choices, and what options exist are often priced far beyond our reach.

Every decision feels like a risk. You could get better. You could get worse. The interaction of multiple treatments could make you far worse, and neither you nor your doctor may be able to identify what caused your new symptoms. It can take months of trial and error, changing one drug or supplement at a time, just to get back to where you started. Or you might stay the same, stuck in a body that feels unpredictable and fragile.

You learn to ask hard questions and to accept that sometimes doing your best with what you know is all that can be done. Over time, you learn to live in the space between uncertainty and endurance, gathering what strength you can for the choices that must be made today. You notice the small moments when your body cooperates, and you practice grace when it does not. Living with medical complexity means accepting that clarity may never come, yet still moving forward, balancing hope with realism, and fear with faith that you will find a way through.

by Jan Mariet 10/31/2025

The Truth About Chronic Conditions

I was raised to believe that I should never let my disability or chronic illnesses “stop me.” For years, I lived by that mindset, pushing myself harder than everyone else, overcompensating to prove I could keep up, and constantly trying to show that I was “enough.” On the outside, it looked like determination and resilience. Inside, it left me worn down, ashamed, and convinced that slowing down or resting meant failure.

The truth is, chronic conditions can and do stop us sometimes. That is not weakness, it is reality. Pretending otherwise does not make anyone stronger. It only piles guilt on top of the burden we already carry. My worth has never depended on how much pain I can endure with a smile, or how many hours I can work just to prove I belong.

I am learning that it is okay to acknowledge limits. It is okay to rest. It is okay not to be “superhuman.” My value has never been tied to how far I can push past pain, and neither has anyone else’s. So please, stop repeating phrases like “I never give in to my disability” or “I never let my chronic illness slow me down.” Sometimes chronic conditions are debilitating. They do stop us, and that is not a personal failure.

What truly matters is not how much we can push through, but how we learn to live honestly with the bodies we have. True strength is honoring our limits with dignity, grace, and self-compassion.

True strength is not pushing past pain. True strength is honoring your limits.

Both/And (Poetry)

Introduction: Disabilities and chronic illnesses aren’t black and white. Like the world itself, they come in many shades of gray, and sometimes, contradictions exist side by side. Life isn’t divided neatly into ‘healthy’ and ‘unwell.’ There are countless ways of being, with shifting energy and overlapping truths. We can live in the space of ‘both/and.’

Both/And

by Jan Mariet

I can be strong and still need support.

I can be hopeful and still be afraid.

I can be caring and still set boundaries.

To be human is not either/or.

It is both/and.

Both/Andby Jan MarietI can be strong and still need support.I can be hopeful and still feel afraid.I can be caring and still set boundaries.To be human is not either/or.It is both/and.

Light and Its Absence (Poetry)

Light and Its Absence

by Jan Mariet

Sometimes we imagine the world in black and white,
as if life must choose one way or the other.

We tell ourselves we are desolate
or we are full of hope, but never both at once.

Yet the truth is gray. Our fears, our longings,
our thoughts that double back on themselves;
they live side by side, never asking permission.

To be human is to carry contradictions,
to hold unity in pieces that do not match
and yet belong together.

Don’t you see?

I can be okay and still need support.
I can be helpful and still say no.
I can be good and still make mistakes.

I can yearn for growth and tremble at change.
I can lift my eyes in hope and still question tomorrow.

I can care fiercely and still guard my boundaries.
I can be independent and still receive help with gratitude.

I am not required
to choose one side of myself
and banish the other.

I am the paradox,
the living proof that light and its absence
can inhabit the same sky.

Written by Jan Mariet 10/20/2025

Light and Its AbsenceBy Jan MarietSometimes we imagine the world in black and white,as if life must choose one way or the other.We tell ourselves we are desolateor we are full of hope, but never both at once.Yet the truth is gray. Our fears, our longings,our thoughts that double back on themselves;they live side by side, never asking permission.To be human is to carry contradictions,to hold unity in pieces that do not matchand yet belong together.Don’t you see?I can be okay and still need support.I can be helpful and still say no.I can be good and still make mistakes.I can yearn for growth and tremble at change.I can lift my eyes in hope and still question tomorrow.I can care fiercely and still guard my boundaries.I can be independent and still receive help with gratitude.I am not required to choose one side of myselfand banish the other.I am the paradox,the living proof that light and its absencecan inhabit the same sky.Written by Jan Mariet 10/20/2025

Unseen (Poetry)

Unseen

by Jan Mariet

Those who silently struggle carry
a thousand untold stories.
They do not speak
of the shadows that cling to them,
or the heaviness
that steals their light.

They become expert at silence,
at suffering quietly behind
locked doors,
hiding everything
in small, hollow words
that reveal
nothing.

They imagine strength, rising
toward growth,
toward creation, toward purpose,
instead of being consumed
by exhaustion
and pain.

Each time they whisper, “I’m fine,“
their mask draws
across the storm inside.

Unrelenting weight
divides a soul in two.

One side reaches for meaning,
for independence, for
the dignity of work
and purpose.

The other side knows
the truth: that
pain will rise,
fatigue
will return,
and each attempt
will crumble to dust.

It is the cruelest battle,
between the boundless soul
that longs to rise
and the weary body
that pulls it back to earth.

(10/10/2025)

Dear Healthy People

Dear Healthy People,

Remember that health is not guaranteed. Chronic illness or disability can strike anyone: young or old, rich or poor, careful or careless. You can eat perfectly, exercise faithfully, stay positive, and do everything “right,” and it still might happen to you.

No amount of money, no circle of family or friends, no dedication to your job or your dreams can prevent it if it comes. Chronic illness and disability arrive uninvited, often without warning, and always without permission. They are not punishments, not failures, and are not consequences of not trying hard enough. They are simply realities of life that any person may face.

So, appreciate the ordinary things your health allows you to do: working, moving freely, making plans, and being independent. Those things feel permanent until the day they aren’t. If illness or disability takes hold, it can alter every part of your life, no matter how much you’ve worked for or built.

Gratitude for your health doesn’t mean living in fear; it simply means recognizing that what you have today is not promised tomorrow. Live fully, with compassion for those who are traveling a more difficult road, and with awareness that you could be standing in their place at any moment.

Sincerely,

Chronically Ill, Disabled People Who Never Thought They’d Be in This Position

Why I Won’t Try Your ‘Cure’

I often wonder why people, most of whom have never even heard of my illness, let alone lived with it, believe they’ve discovered a ‘cure’ that somehow escaped the knowledge of doctors and researchers who have dedicated their entire careers to this condition. Yet, I’m expected not only to be grateful for these unsolicited and often dangerous suggestions but also to gamble with my health and well-being on the basis of hearsay and unproven treatments.

Why would I take such a risk? Why should anyone? And why would someone without medical expertise in this specific field think it appropriate to try to persuade me otherwise?

I have to ask, why would someone even suggest this to me, much less expect me to try it? Do they not consider the possible outcome if their ‘miracle cure’ goes wrong?

Is my health so trivial to them that they can toss out reckless advice without thought for the consequences? Or is it simply that my honesty about the depth of my illness makes them so uncomfortable that they feel compelled to fill the silence with quick fixes, regardless of how harmful those fixes might be?

At times, it feels less like concern and more like dismissal; as though they care more about easing their own discomfort than about truly supporting me. And if that is the case, then I cannot help but wonder: do they care about me at all?

I also find myself wondering, do they believe I’m not really trying to get better? Do they truly think there’s some easy “cure” I’ve simply overlooked, as though I haven’t spent years seeking help, researching treatments, and enduring therapies?

Sometimes, I even question whether they assume I don’t actually want to get well, as if living with a serious illness is somehow a choice. That thought crosses my mind more than I care to admit, and it stings; not because it’s true, but because it reveals how little they understand the reality of living with a chronic condition.

I have doctors and medical professionals who have tried, and who continue to try, every option available. They haven’t given up, and neither have I. But part of this journey means facing reality: that not every illness has an easy fix, and that sometimes the best we can do is manage, adapt, and keep searching for ways to live as fully as possible.

I’ve endured the fallout of failed treatments: side effects strong enough to drop an elephant, one new medical issue piling onto another, dangerous drug interactions, worsening symptoms, and an ever-growing list of physical and mental limitations, all in the name of being open-minded and willing to try anything that might offer relief. And yet, despite all that I’ve risked and suffered in pursuit of wellness, there are still people who imply that I’m not ‘doing enough’ or that I’ve somehow overlooked an easy fix. Their casual suggestions dismiss not only my life-experience but also the years of effort, sacrifice, and resilience it has taken just to keep going.

The truth is, my persistence is proof of my strength. I have faced setbacks that could have broken me, yet I continue to show up, to adapt, and to live as fully as I can within the limits my body places on me. My willingness to keep trying; despite pain, disappointment, and uncertainty, shows that I haven’t given up on myself or on life. If anything, it proves that resilience is not about finding a cure, but about finding the courage to carry on in the face of what cannot be cured.

Like the old English proverb says, “That which cannot be cured must be endured.” I have endured. I continue to endure. Not because I’ve given up, but because true strength lies in living fully, even when there is no cure.

by Jan Mariet, 9/26/2025

How People Respond to Your Chronic Illness

When someone is struggling with a chronic illness, or the associated mental health issues that come from having an incurable illness, chronic pain, loss of income and lifestyle, losing their purpose in life, and having to start over in many cases, what they need is your compassion and empathy.

Telling them things like “Oh, you’ll be fine!” or “God wouldn’t give you anything you can’t handle!” is not really helpful. When you say things like this, you may make yourself feel better, but you aren’t making them feel better. Instead, you are minimizing their condition and their concerns.

Changing the subject (so they won’t dwell on it) is not useful. Believe me, they are already dwelling on it! Chronic pain makes them dwell on it, even if they don’t show it.

Offering them any advice when you have absolutely no knowledge about their chronic condition is not only unhelpful, but it can also be dangerous!

What they need most is a safe place to express their concerns, their fears, their frustrations, without having to hold back. They need to be included. Most of all, they need to be heard, loved, and supported.

Recognizing When You’re Struggling with Chronic Illness

When people say, “I never saw the signs,” about someone who is struggling, it often isn’t true. The signs are usually there — quiet, subtle, easy to miss — not only by friends and family, but sometimes even by the person living with chronic illness.

Living with a long-term illness is more than managing symptoms. It’s coping with losses: loss of health, career, independence, purpose, or even identity. Those losses often come with fatigue, grief, frustration, and emotional pain. Recognizing when you’re struggling is not weakness; it’s the first step toward getting support.

Hiding the Struggle

Many of us deny how bad things are, because we don’t want to burden others or admit (even to ourselves) how overwhelmed we feel.
We may avoid conversations that leave us vulnerable.
We might fear venting in case it pushes friends away.
Negative thoughts creep in: “I deserve this. I’m being punished. I’ve failed. This is my fault.” These beliefs can drive us into deeper isolation.

The Isolation Cycle

When we feel optimistic, we make plans, but when pain or fatigue that force us to cancel, guilt and disappointment push us further into withdrawal.
Isolation fuels depression, which fuels more isolation. It becomes a toxic cycle that feels impossible to break.
Even enjoyable hobbies fade away, not because we don’t want them, but because our bodies won’t cooperate. This deepens the sense of helplessness and grief.

Everyday Signs of Struggle

Self-care slips: irregular meals, skipped showers, neglected laundry, unkempt appearance. These aren’t just a “lack of motivation.” They’re signs of emotional and physical overload.
Sleep disruption: oversleeping, staying awake all night, or restless exhaustion from pain or worry.
Irritability: lashing out disproportionately is often the language of distress, not anger.
Cognitive fog: losing your train of thought, abandoning books or TV shows because you can’t follow them, forgetting simple tasks. Your energy is going into survival mode, leaving little energy left for focus.
Talking only about illness: when symptoms dominate every conversation, it’s often because life feels consumed by medical trauma, leaving little else to share.

The State of Your Space

Our homes often mirror our internal state. Signs of struggle may include:

Clutter piling up in unusual places.
Unopened mail, unpaid bills, unanswered texts.
A heavy or dark atmosphere, poor lighting, and constant background noise to drown out inner thoughts.

This doesn’t always mean laziness or disorganization. It may simply reflect emotional turmoil, physical limits, or sheer exhaustion.

Recognizing the Signs in Yourself

If you notice these patterns in your own life, it doesn’t mean you’re failing. It means you’re human, living with something unimaginably hard. Chronic illness is not just a physical condition; it’s an ongoing emotional and mental challenge.

When you recognize the signs in yourself, try not to judge them. Instead, see them as signals: I need help. I need connection. I need compassion from others and from myself.

Ashes in the Morning Glow: A Life Unlived

I want to live fully, with purpose, independence, and stability, but the pain, fatigue, and flares of my disability and chronic illness pull me back every time, no matter how hard I try.

I keep trying anyway, knowing full well it will end in defeat, because the alternative is just giving in to the pain and emptiness. The hardest part is the difference between the life I image, and the only one my body can actually endure.

At times, I accept my fate. There are times I rage against it with such determination and strength that I could rebuild our world into the paradise it was always meant to be. But like a moth drawn to the intense flame, it always leads to the most predictable end – being engulfed, so temporarily, in the warm of the flame, and then abandoning the heat and light to the coldest, darkest end, laying crushed and helpless near the burned ashes in the pale morning glow. And inside, realizing that none of it made the least bit of difference.

Today is my 38th straight day of being alone, having nothing in particular to do, no particular contact with anyone else, and stretching mundane tasks across endless days just to have something, anything, to do. It is the 38th day of being crushed by the isolation of being totally and utterly useless and unreliable.

I’m not even particularly sad about this. I’m not anxious, or unhappy, or even overwhelmed. I’m just here, existing without any meaningful purpose, occasionally starting projects I know my physical body will never be able to complete, and feeling completely engulfed by the unending tedium that fills each endless day.

I make no decision more important than do I go to the grocery store today to pick up three items, or wait and go in two days and pick up six items. I have no plans more important than do I go to the drug store and walk around, or sit around at home staring a wall or out the window.? Do I stay at home, or walk a short distance even though it means pushing past pain that I’m so good at hiding that no one could scarcely guess how intense it is?

Sad, happy, defeated, empty – the words mean nothing except a dull monotony of minutes ticking by… Hours ticking by… Days ticking by… A life that is ticking by…

Although I am starved for conversation, I rarely call or contact anyone. The only thing I have to share is the monotony of endless empty minutes, or disjointed memories of a life from so long ago, and once-interesting stories that lost their luster a dozen tellings ago.

After years of medical treatments, hospitalizations, recoveries, re-hospitilizations, attempts at returning to a purposeful life followed by inevitable failure after destructive failure, what do I have worthy of being said, much less shared? I bore myself, and hear my own pain in my forced positive conversations.

I am caught in an endless cycle of adversity, isolation, partial recovery, resiliance, rebuilding, re-emerging, strength, pushing above and beyond my puny physical abilities, and crushing defeat. Do I wallow in the agony and isolation of defeat, or try again? I always try again, and the cycle repeats, endlessly. At this point, even I recognize the futility of unsubstantiated hope. I am that moth draw to the flame that will ultimately burn my very soul, with the only alternative the coldness of laying, spent and lifeless, in the cold, damp morning sand.

I have no inspiration left. I go through the motions, through the expected rhythms of daily life in complete exile, sometimes pushing myself in meaningless tasks, sometimes allowing myself to just give in the monoteny of sleep and scrolling, and always, always, being filled with the incredibly emptiness of near-complete isolation.

In many ways, I wish I was sad, or dejected, or depressed, because those things eventually end. Instead, I am completely engulfed in waves of numbing futility. If I care, I will be disappointed. If I try, after only the tiniest bit of success, I will be overwhelmingly crushed by inevitable failure. If I even dare to hope, I won’t just be disappointed, but will be overcome by desolate failure. I haven’t given up. I’ve just realized the futility of trying to be something I have no ability to be.

Today is yet another day, of empty, useless minutes ticking by. I think this numbness I feel is my decision that it is better to feel nothing at all than to continue in this endless cycle. Is a choice between giving in or repeating a painful, self-defeating, endless cycle really any choice at all?

When Hope Becomes Grief

I’m not depressed, but I am profoundly sad. What I feel is grief; the grief of losing something I thought I had finally regained. I had never allowed myself to hope that I could teach again, but the moment I let myself believe, I opened myself up to a grief deeper than I ever imagined.

I regret hoping, dreaming, believing that I could build a meaningful life again, because losing it feels unbearable. As much as I try to cling to the words, “this too shall pass,” those words feel hollow and completely devoid of any comfort.

I poured myself into preparing for a part-time teaching job that seemed possible, and for a while, I felt alive again. But when my health couldn’t withstand the class I was given, it was taken away. That loss left me devastated, discouraged, and questioning where I can still find meaning and purpose.

I feel lost. I want to matter again, to contribute something of value, but I don’t know how. Most mornings I wake up and can’t think of a single thing worth doing beyond the bare minimum of household chores, and even those are slipping. Even simple things, like making a meal or refilling my water glass, feel meaningless and heavy, like a waste of time.

I want to feel happy, to feel joyful – to feel anything other than numb and lost. But I can’t seem to reach those feelings anymore. I do hope they’ll return someday, but right now even hoping feels like more than I have the strength for.

One of the hardest parts is when well-meaning people respond with, ‘Have you tried this?’ or ‘I bet you could do that.’ I know they want to help, but it feels dismissive of how much I’ve already tried and failed.

Tutoring, online teaching, the library, volunteer work – I’ve explored them all. Even by writing books and teaching materials, I’ve lost a far more than I’ll ever earn trying to get the word out there about the things I’ve written or created, so all of those attempts have cost me more than twice the amount I’ve ever made. I’ve lost money at every attempt, after spending months of time, energy, and effort, which makes my financial situation even more precarious.

The joy I once found in writing books, sharing my experiences, hoping to help others, has faded. There is nothing sadder than pouring your heart and soul into a book only to discover that no one wants to read it. If people don’t buy it, what was the point of doing it? Yes, writing can bring some self-healing, but the steady hope that my words might help someone else has dimmed. Despite my best efforts in writing and marketing, book after book has fallen flat, and with it, the sense of purpose I was reaching for.

Each attempt has run into barriers with my health, finances, or physical limitations. Having to explain or justify why it didn’t work only deepens my sadness and sense of loss.

Right now, all I can really do is sit with the grief and acknowledge the weight of it. I feel very alone in this – how could I not? I’ve poured so much time, energy, and effort into trying, re-learning, researching, and not giving up. I’ve tried and failed, and tried again, over and over. But each time it feels like I end up at another dead end, facing more closed doors and more empty hours in my day.

It’s easy enough to say, “Things will happen as they should,” or “God has a plan,” but after so many failed efforts and closed doors, I find little comfort in those words. The small voice that used to whisper, “I’ll try again tomorrow,” trembles now, unable to speak without getting choked up.

I haven’t given up or lost my faith, but I’ve lost the ability to believe there are still options or that something out there might actually work. I feel too beaten down to summon the strength to try again. The resilience, persistence, and hopefulness that once defined me are gone.

If I’m honest, I’m really no worse off than before. But back then, I carried this sense that things were improving, moving forward, heading somewhere. Now I just feel… nothing.

Each day feels like going through motions: getting up, doing chores, shopping for groceries, and making bland, tasteless meals that still make my gut hurt. Even the rare treat comes at a huge physical cost. Then there’s the constant cycle of scheduling medication deliveries, remembering pills and injections, and keeping track of it all. It leaves me with this overwhelming sense of aimlessness, like I’m not really living, just existing, with nothing meaningful to hold onto.

While I’m not really worse off than before, now it just feels like I’m going through the motions – chores, meals, medications – without any sense of purpose. I feel like I’m existing, but not really living

I’m not hopeless exactly… I’m just no longer hopeful, and that feels like an even heavier burden.

How Illness Reshaped My Life

I used to be a high-energy workhorse—the kind of person who worked 80-hour weeks, volunteered on weekends, and never slowed down. I was raised to push through and get things done. Giving up was never an option. I grew up believing in the mantra: “When the going gets tough, the tough get going.”

I wore that belief like a badge of honor. I thought it meant I had a strong work ethic, that I was dependable, resilient, and capable. I didn’t realize until much later what I now see so clearly: that underneath all that determination was a quiet desperation to prove my worth; to show the world—and myself—that I was “good enough” despite my disability and chronic pain.

In my relentless effort to keep up, to exceed expectations, to prove I wasn’t defined by my limitations, I ignored what my body had been telling me all along. The pain wasn’t a test to overcome—it was a message. My body was asking for rest, for recovery, for compassion. But I had been taught that yielding to pain meant weakness. I believed that slowing down meant failure, and I refused to fail.

Looking back, I wish I had known how much damage I was doing. I didn’t feel like I could ease up or give less than 200%, because somewhere deep inside, I believed that if I did, it would prove what I feared most—that I wasn’t enough. I saw my limitations as personal failings, not medical realities. I thought if I just tried harder, I could overcome anything. But that belief was dangerous. I shudder to think how many times it nearly broke me completely. No one can survive under that kind of relentless pressure. It was an expectation no human—especially one living with a painful progressive disability—could ever meet.

Eventually, my body couldn’t take it anymore. The act collapsed. I couldn’t keep up the performance anymore.

The pain became unbearable, and the cost of ignoring it caught up with me. One day, I simply couldn’t get up. I couldn’t walk. I couldn’t move. The pain was crushing, and my body—at last—forced me to stop.

Over time, a lifetime of medical trauma, surgeries, and chronic conditions have changed the way I function—not just physically, but neurologically. I now live with a highly sensitive nervous system, and a digestive system that responds to even mild stress with dramatic, debilitating symptoms. This is the new reality I’ve had to learn to navigate.

When Sound Feels Like a Threat: Living with a Sensitized Startle Reflex

Sudden sounds—doors slamming, a dog barking, a loud truck or motorcycle passing, a dropped pan—don’t just make me flinch. They jolt through me like a shockwave, sending my heart racing and leaving me shaking long after the noise fades. This is more than being sensitive or anxious. It’s the result of something called central sensitization, a condition where the nervous system becomes overly reactive after years of chronic illness, pain, and physical trauma.

This hyper-vigilance can also stem from medical trauma. Long hospital stays, being hooked up to medical pumps and machines, cancer treatments, and multiple surgeries leave marks not just on the body, but on the nervous system. My body has been conditioned to stay on high alert—like it’s bracing for the next threat. My body is always waiting for the other shoe to drop.

After a loud or unexpected noise, it takes a long time for my body to come down from the ‘fight-or-flight’ response. Others may think I am being dramatic or over-reacting, but even once I realize there’s no real danger, the adrenaline rush, rapid heartbeat, and stressed breathing continue as if I’m still under threat. It’s as if my body can’t turn off the alarm—it reacts like I’m in a life-or-death situation, even when I’m clearly not.

Balance challenges and mobility issues further feed into this sensitivity. When your footing is unsteady, loud surprises don’t just scare you—they feel dangerous. They make me feel terrified that I will fall. My startle reflex is my body’s way of trying to protect me, even when there’s no real danger.

The Gut’s Breaking Point: How Stress Triggers Debilitating Symptoms

As someone living with Short Bowel Syndrome (SBS) and severe radiation damage to my digestive system, stress doesn’t just make me uncomfortable—it completely incapacitates me. A difficult conversation, an angry confrontation, a tight deadline, or even a minor conflict can trigger days of intense symptoms: relentless diarrhea, painful bloating, cramping that makes it hard to stand upright, and overwhelming abdominal pain. These aren’t just inconvenient flare-ups—they’re completely disabling.

To make matters worse, the physical toll often leaves me unable to leave home. When your body is in that state—unable to manage basic function, doubled over in pain, wearing oversized clothes to accommodate severe abdominal distension and flatulence—being out in public simply isn’t possible. The risk of an embarrassing or uncontrollable episode forces me into isolation, not by choice, but by necessity.

Because I lack much of my small intestine and bowel, my ability to absorb nutrients, regulate fluids, or process bile acids is fragile at best. Add stress into the mix, and it becomes nearly impossible. I experience gastric dumping, bile acid malabsorption, and intestinal bloating so severe that it causes visible abdominal distension—often forcing me to change into larger, looser clothing and limiting where I can comfortably go in public. This isn’t something I can “power through.” This is my body’s non-negotiable limit.

Why I Can’t Work Anymore—and Why That Doesn’t Mean I’ve Given Up

Multiple doctors have told me plainly: you cannot return to work. The stress would endanger my health, unravel my digestion, and leave me in medical crisis. As someone who used to find meaning and value in being busy, this has been a profound shift. But it’s not failure—it’s adaptation.

I’m not ‘giving up’—I’m honoring my body’s limits. I’m not who I was years ago, and that’s okay. The same strength that helped me push through years of work and illness now shows up in how I protect myself from what will harm me. Rest isn’t weakness. It’s wisdom. Survival is strength.

My job now is healing, managing a full-time internal ecosystem, and finding joy within limitations. And that’s a career of its own kind—one that demands endurance, patience, and resilience.

No matter how carefully I manage my health and lifestyle, there are still moments when something unexpected triggers a new medical crisis. It’s incredibly frustrating. I find myself getting angry, blaming myself for not seeing it coming—like I should’ve somehow predicted and prevented it.

But the truth is, I can’t avoid the unavoidable. I can’t plan for every possibility. My body no longer has the resilience to ‘roll with the punches,’ and I’m learning to offer myself grace instead of guilt. This is still an area I struggle with. I tend to expect myself to find solutions and fix problems—even when doing so isn’t entirely possible or reasonable. Letting go of that instinct is hard.

Final Thoughts

People may not understand why I’ve stepped away from traditional work, but that’s okay. The truth is, even minor stressors can trigger a medical crisis for me—one that may result in days to weeks of debilitating symptoms, medical intervention, or even hospitalization. This isn’t a matter of choice or preference—it’s a matter of protecting my health and staying out of medical crises. I’m learning how to live fully within those limits, and that takes strength of a different kind. I didn’t quit—I adapted. And that, in itself, is its own kind of triumph.

A Question of Value

Society often frames disability and chronic illness as the result of personal failure—a lack of willpower, a moral shortcoming, or irresponsibility. If only we tried harder, if only we pushed through the pain, if only we accepted that the systems built for the non-disabled majority should rightfully exclude us for the so-called greater good. This has become the quiet, unspoken mantra of the many.

But here’s the unshakable truth: you can live with unrelenting integrity, responsibility, and care—and still be disabled. Disability is not a verdict on character. It’s not something earned or deserved. It’s a reality that can touch anyone, no matter how virtuous or determined they are.

It’s so odd when people say they don’t let their illness define or limit them. Do they think the rest of us simply surrender, letting our illnesses strip everything away without resistance?

We celebrate the disabled people who defy every barrier, who “overcome” every challenge, every limitation, every impossible obstacle. But who cheers for those who spend everything they have just to take the next step, who wrestle with pain and fatigue to survive another day? Who celebrates the quiet, unseen victories of simply enduring when endurance itself feels impossible?

Are we somehow less because our bodies are different—because they are fragile, damaged, or simply function in ways you don’t understand? Is our worth diminished simply because of the way we are built? Does our ability to contribute to this world become meaningless because our mobility, dexterity, or appearance defies your narrow expectations?

The answer to these questions lies not in us but in you. Your choice to withhold compassion, to deny empathy, to strip us of the dignity every human being deserves — that was your decision. Your refusal to acknowledge our God-given right to pursue life, happiness, and meaning — that choice was entirely yours.

It speaks volumes, not about our value in the grand scheme of things, but about yours.

Resilience is my Power

When considering the things I can and cannot do in life, I try to take a moment to truly acknowledge all that I have accomplished and the blessings that currently fill my life. I have a comfortable home, access to medical care, enough food, and resources to handle emergencies. My life is enriched by a few good friends, a spectacular best friend, and a little dog who brings constant companionship and joy. While finances are often stretched, I’ve managed to avoid significant deprivation, which is no small thing.

Living here in Florida feels like its own kind of gift. The sunny weather, year-round blooming flowers, and my three-wheeled bike allow me to enjoy morning rides nearly every day. My dog brightens every encounter, winning over neighbors and strangers alike, and making new friends daily.

I’m fortunate to live by a serene pond, surrounded by a remarkable variety of wildlife: ducks, cranes, hawks, eagles otters, turtles, and countless others. My garden flourishes with vibrant hibiscuses, bougainvilleas, and blooming milkweed that attract butterflies and pollinators. These things remind me of the beauty that is all around me, even on my tougher days.

When my physical limitations weigh heavily on me, I can find escape in books, allowing my mind to wander freely even when my body cannot. Despite challenges, I can still build a life with meaning and joy. I know it’s important to reflect on all the opportunities and blessings I have rather than focus solely on my struggles.

Some days, I can walk short distances with little trouble. Other days, I use an upright rollator, canes, or even wheelchair services. My abilities vary—some days I move with relative ease (though never without pain), and others, I can’t manage even a few steps. My balance and strength shift unpredictably, reminding me daily to listen to my body and respect its limits.

It’s not always easy to stand firm in those limits, especially when others misunderstand or dismiss them. On good days, people may assume I should always function at that level, and their disbelief or invalidation can tempt me to push myself beyond what’s safe. I’ve learned—sometimes the hard way—that doing so often leads to pain, injury, and days of immobility.

Still, I recognize my progress. I’m better at navigating my limitations now, though I’m far from perfect. When someone dismisses my pain or assumes I’m lazy or faking because I can’t do something I did before, it invalidates what I know to be true about myself: my “normal” is ever-changing. Between neuropathy, joint inflammation, fatigue, and muscle exhaustion, I must adapt daily—sometimes even hourly.

If you’ve never experienced this, I understand why it might be hard to recognize or comprehend it. But please understand that your inability to see my limitations doesn’t make them any less real. If you cannot accept this, I will protect my well-being by limiting how much I rely on you for emotional support.

Instead of focusing on what I can’t do, I have found strength and empowerment in recognizing what I can do. My abilities may be fewer, but they hold great value. I’ve learned to adapt, to problem-solve creatively, and to remain resilient in the face of adversity. These qualities allow me to live within my limits while continuing to find joy and purpose.

I have the intelligence to educate myself, the self-awareness to reflect deeply, and the courage to advocate for my needs. I’ve learned to persist—kindly but firmly—until I get the support I require. While there are days I feel exhausted and overwhelmed, I remind myself that others might face similar challenges. Often, when I struggle to find strength for myself, I find it by helping them.

Ultimately, I know my resilience is my power. By focusing on my strengths and embracing my abilities, I can live a life of meaning, even in the face of on-going challenges.

Dreams are a Funny Thing

Dreams are a funny thing. In my dreams, I can do things, like sitting cross-legged, running down the street, climbing huge flights of stairs, and walking pain-free without the slightest limp or wobble.

I can partner dance. I can sit on the floor and get up with ease. I can soak in a tub. I can hike up a mountain. I can paddle board. I can hold a grandchild on my hip. I can have a grandchild. I can water ski. I can do beautiful needlepoint and embroidery.

I can play golf, and ride a jet ski. I can climb a ladder, and paint the door. I can visit quaint shops in totally inaccessible historic buildings. I can kneel down at church. I can spin around in a field like Julie Andrews in the Sound of Music. I can even line dance without losing my balance at every turn.

I wish I couldn’t do these things in my dreams. It all seems so real. It all feels so wonderful.

And then I wake up, and it’s gone.

In my dreams, it feels real. I feel so alive and so connected to the world. Then the morning comes, the dream is over, and I painfully try to get out of bed.

We Are All Worth It! A Call to Action

Our government is rolling back the ADA requirements that enable people with disabilities to exist and function in a world that is already less-than-accessible. These protections, once a lifeline, are being sacrificed to pad the profits of companies that are already immensely wealthy. This isn’t just an issue of greed—it’s a fundamental failure to value the humanity of people with disabilities.

Right now, our ability to work, to support our families, and to live with dignity is under attack. For those who can’t work due to the severity of their disabilities or a lack of accessibility, the safety net is already riddled with holes, leaving many condemned to a life of poverty. And the changes being made now will make it worse.

Americans are losing access to healthcare, especially through Medicaid, a program that provides vital medical treatment to millions of people, including children. Let this sink in: 36% of Medicaid recipients are children. Our government is choosing to deprive children of the medical care they need to survive and thrive, simply because they are poor, or because they are disabled. How can we call ourselves a compassionate society if we allow this to continue?

People with disabilities did not choose their circumstances. We did not choose to be born this way, to endure accidents or illnesses that left us disabled, or to grow old and face the challenges that aging naturally brings. And yet, instead of support, we are met with barriers—both literal and systemic.

The truth is, accessibility benefits everyone. A building with open-access ramping welcomes all. A system designed with inclusion in mind uplifts entire communities. So why are we allowing new buildings to be designed with grand stairs and inaccessible layouts, locking out 25% of the population? Why are we gutting the very regulations that make it possible for us to participate in society?

The answer is as simple as it is infuriating: Too many decision-makers see no value in accessibility because they see no value in us. And we cannot let this stand.

Here’s what you can do:

• Speak up. Contact your representatives. Demand that they protect the ADA and expand accessibility. Ask them to support Medicaid and other healthcare programs that serve the most vulnerable.

• Amplify our voices. Share stories of people with disabilities. Show the world that we are not a burden but a vital part of society.

• Support accessibility in your community. Advocate for accessible design in public spaces, workplaces, and businesses.

• Hold corporations accountable. Push back against the greed that prioritizes profits over people.

• Educate yourself and others. Learn about the challenges faced by people with disabilities and share that knowledge with those around you.

This is a fight for equality, for dignity, and for the basic human rights of 25% of our population. People with disabilities are not asking for handouts; we are asking for the opportunity to live, work, and contribute. But we cannot do it alone.

Stand with us. Fight with us. Together, we can create a world where accessibility is the norm, not the exception—a world that values every person, regardless of ability.

It is time to wake up. Time to recognize that people with disabilities are not a burden, but an integral part of our society – a society that claims to value inclusion, equality, and opportunity for all.

These attacks on accessibility, medical care, and the foundational protections of the ADA are not just attacks on the disabled community – they are attacks on our shared humanity. We cannot stand by as the doors to opportunity, healthcare, and dignity are slammed shut for 25% of our population.

We deserve better. Our children deserve better. Our communities deserve better. The strength of a society is measured not by how it treats its wealthiest and most privileged, but by how it uplifts its most vulnerable. Accessibility and accommodations are not luxuries – they are necessities that allow us to live, thrive, and contribute.

To anyone listening, I urge you to stand with us. Amplify our voices. Advocate for accessibility, inclusion, and fairness. Demand that our government and corporations do what is right, not what is easiest or most profitable. Together, we can build a future where everyone, regardless of ability, is seen, heard, and valued. We are ALL worth it.

Resilience and Wisdom You Never Knew You Had

There are so many hardworking people who poured their hearts and souls into life, only to be brought to their knees by chronic illness. I was one of them. I used to believe that hard work could conquer anything, that if I just gave my all, I could overcome any obstacle. But chronic illness taught me a humbling truth: sometimes, no amount of effort can fix what’s broken. And that’s not a failure—it’s reality.

This realization can feel devastating, like a piece of who you are has been taken away. But it doesn’t mean you’re not enough. It doesn’t mean you’re weak or broken. It means you’re human. Chronic illness forces you to find strength in surrender, grace in struggle, and courage in simply existing.

Even when the road seems impossible, you are still worthy of love, purpose, and joy. You are enough—not because of what you do, but because of who you are. This journey may reshape you, but it can also uncover a resilience and wisdom you never knew you had. Keep going, even on the hardest days. You are more powerful than you realize.

My battles with cancer taught me something else, just as important. The clock is ticking for all of us, though we can’t see it. So, cherish the ones who love you deeply, and let them know how much they mean to you.
Don’t wait for the “perfect moment” to find joy—create it now.

Happiness isn’t something you’ll find later, and life is far too precious to leave any love or laughter unspoken. Embrace every day, because you never know when your time will run out. Live fully and let gratitude guide your path.

When Pain is (Almost) a Good Thing

Today, I’m resting. I don’t feel well. For a few days my right arm has been aching (probably because I’ve been doing too much on the computer, which is hard with my tendon damage from enthesitis.) I’ve been trying to do a lot of graphic design (something I love but haven’t been able to do for ages because of my psoriatic arthritis.) Yesterday, I basically took a break from the computer to try and let my arm recover.

However, I decided to work on my Bird of Paradise plant yesterday late afternoon, just as something to do. I needed to deadhead old blooms, and cut back leaves — because Birds of Paradise can grow and spread so quickly that you have to remove stems on a fairly regular basis. I had to put on special gardening sleeves and leather gloves (the leaves from a Bird of Paradise are sharp and can slice your skin easily, and my skin is very fragile.)

Halfway through, I realize it was too much. My arm hurt all the way up to my shoulder. I wanted to finish pruning the plant. I did a little more, and then did something I rarely do — I stopped even though it was only half done. I thought I had stopped in time, but unfortunately, with PsA and enthesitis, by the time you realize you’ve done too much, you are way past the point where stopping will take care of things.

I was thirsty when I went inside, so I got a bottle of water. I have a special opener for water bottles because my hand is too weak to open them. Every time I lifted the water bottle, my right hand shook so violently I couldn’t even drink out of the bottle. (I finally set it on the table, put a straw in it, and just bent over and sipped the water without touching the bottle, because I kept spilling it and dropping it.)

I had a flashback to when I was first diagnosed with psoriatic arthritis and enthesitis, and how I dropped everything, broke so many plates and glasses (before I started using plastic cups and paper plates) and couldn’t even cut my own food or use a fork. It made me realize how far I’ve come. Other than this episode (which is called a “flare”) I’ve been so much more able in the past 2-3 years when it comes to cutting food, holding a cup, and not dropping a plate.

This is a minor setback brought on by feeling good and doing too much. I have no doubts that with a few days rest and compression, it will subside. When I think back to how bad it used to be, I’m “almost” grateful for this reminder of how far I’ve come.

I may still have a lot of limitations when it comes to physical things, but I think back to 5 years ago, to how bad it was, and I realize what a blessing my biologic is, and how much it enables me to do. Sometimes, pain is (almost) a good thing.

The Invisible Battle of Chronic Illness

Chronic illness doesn’t just slow you down—it reshapes your entire life. You wake up each day with limited energy, and before you even begin, you’re already running on empty.

Pain, fatigue, immune issues—they all chip away at your strength before you’ve had a chance to do anything meaningful. And then there are the endless doctor’s appointments, the phone calls fighting for prescriptions, and the insurance battles that swallow hours of your day.

Managing energy becomes a survival skill. You learn to ration every ounce of strength, carefully calculating what you can afford to do without pushing yourself past the breaking point.

But what happens when the math doesn’t work – when no matter how carefully you budget your energy, there’s just not enough to get through everything life demands? In a world that idealizes constant productivity, chronic illness feels like a losing battle.

Workplaces expect relentless output, and pushing past your limits is often mistaken for ambition and dedication. But for those of us with chronic illness, that “push” comes at a steep cost—one that spills over into our health, our personal lives, and our mental health.

Another issue we have to deal with on a daily basis is doubt – the unspoken skepticism from others—Are you really that sick? People often wonder, are you even trying? After a while, you start questioning yourself, wondering if maybe, somehow, this is your fault. When your abilities shift so drastically from one day to the next, even you begin to wonder if you’re imagining it.

Most days, it feels like you’re barely staying afloat, fighting just to keep your head above water while the world expects you to swim with ease. But while others glide effortlessly, you’re dragging the weight of chronic illness—heavy, relentless, and unyielding. It’s not about swimming beautifully; it’s about surviving the tide and not drowning under the weight of your illness.

The Heavy Toll of Chronic Illness and Stress

Chronic illness doesn’t just affect your health—it reshapes your entire life, including your ability to work. You may have to adjust how you work to cope with pain, stiffness, or limited mobility. In some cases, working may no longer be an option, leading to financial struggles that add another layer of stress.

As your life shifts in ways you never expected, feelings of anxiety, uncertainty, and loss of control can take hold. The unpredictable nature of your illness, the financial strain of being underemployed or unable to work, and the constant worry about the future can be overwhelming.

The stress of living with a chronic illness doesn’t just affect your emotions—it wears on every part of you. Irritability, sadness, loss of interest in things you once loved, exhaustion, and sleep disturbances become daily battles. Over time, that stress can harden into frustration, anger, hopelessness, and even depression.

Under normal circumstances, the body’s stress response is temporary—once a threat passes, things return to normal. But when stress is constant, when your body always feels under attack, the fight-or-flight system stays switched on.

This prolonged stress response disrupts nearly every bodily function, increasing the risk of anxiety, depression, digestive issues, chronic pain, heart disease, high blood pressure, stroke, and cognitive problems like memory loss and difficulty focusing. It can also lead to weight fluctuations, sleep disorders, and muscle tension that never truly goes away.

Over time, chronic stress rewires how you react to the world. Small frustrations that others shrug off can feel unbearable. With every repeated activation of the stress response, the toll on your body and mind deepens, making an already difficult illness even harder to bear.

Navigating Life with a Chronic Illness

Coping with a chronic illness goes beyond managing symptoms—it requires adapting your entire lifestyle. For me, accepting a new normal is one of the hardest parts.

The physical pain and emotional toll are constant, but talking about them feels like admitting defeat. Personally, I don’t want to burden others or seem “weak,” so I stay silent about the ways my condition makes me feel like life is passing me by.

No matter how much I wish my illness didn’t exist or that it didn’t limit my choices, it’s impossible not to dwell on what I’ve lost. Some days, managing it feels so overwhelming that I question who I even am anymore.

Taking an active role in my healthcare—learning all I can about my illness, making notes on what works and what doesn’t, and working with doctors instead of waiting for answers—helps me feel more in control. But finding a doctor who truly listens and is committed for the long haul – that’s another battle entirely.

As my abilities shift and my limitations grow, I have to constantly reevaluate my goals and redefine what a meaningful life looks like. It’s an exhausting, never-ending process—but it’s the only way forward.

Products That Can Bring You Joy

As we recover from a variety of illnesses, or while during treatment, we can often find ourselves spending an inordinate amount of time on bed rest. Here are some fun things to choose from to pass the time while on bed rest or resting at home.

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Assorted stickers can add so much fun to letters, envelopes, journals, calendars, and more! So many to choose from!

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01/25/2026 05:37 am GMT

Great for those with arthritis!

2 Pieces Different Size Latch Hook Set, Latch Hook Crochet Needle, Crochet Hook with Latch, Dreadlocks Crochet Hook Set, Latch Hook Crochet Needle, Bent Latch Hook for Carpet Making

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This latch hook has an oversized handpiece and is easy to hold even with arthritis or hand neuropathy. (And yes, it is a two-pack.)

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01/25/2026 05:39 am GMT

Numptain Latch Hook Kits for Kids,DIY Rug Crafts Butterfly Pattern Color Printed Canvas,Latch Hook Kits for Beginners Handmade Needlework Crafts Home Decoration,12"x12"

$16.99

Latch hook can be so much fun! It is also easy to stop and put it away at any time, and start again another day.

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01/25/2026 05:47 am GMT

Cancer Sucks Coloring Book: Stay Positive With This Motivational Coloring Book, Filled With Inspirational Quotes With For Women

$9.99

I wholeheartedly agree, Cancer sucks!

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01/25/2026 05:38 am GMT

Crayola Ultra Clean Fine Line Washable Markers (40ct), Colored Markers for Kids, Fine Tip, Arts Supplies, Gifts & Stocking Stuffers, 3+

~~$23.99~~ $11.99

Crayola's best skinny markers for adult coloring books.

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12/09/2025 06:07 pm GMT

Large Print Easy Color & Frame - Stress Free (Adult Coloring Book)

~~$9.98~~ $6.98

Large designs. The spiral makes it easy to hold on your lap. You'll want fine line markers or colored pencils for this one.

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12/09/2025 10:04 pm GMT

Crayola Ultra Clean Washable Markers (40ct), Coloring Markers for Kids, Coloring Book Marker Set, Stocking Stuffers for Kids, Ages 3+

$18.73

More colors for more fun!

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01/25/2026 05:47 am GMT

Crayola Broad Line Markers (12ct), Washable Markers for Kids, Arts & Crafts Supplies, Coloring Markers, Toddler Stocking Stuffers, 3+

~~$10.69~~ $4.98

Twelve pack of colorful markers!

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01/25/2026 05:42 am GMT

9" x 12" Marker Paper Pad, 100 Sheets Marker Paper Sketchbook, 73lb/120gsm Alcohol Marker Paper, Marker Sketchbook Bleedproof for Drawing Coloring Kids Art Supplies.

~~$21.99~~ $18.99

Marker paper is thick so your colors won't bleed through.

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01/25/2026 05:48 am GMT

Fubbles Bubbles No-Spill Bubbles Tumbler | Bubble toy for babies toddlers and kids of all ages | Includes 4oz bubble Solution and bubble wand (tumbler colors may vary)

~~$10.99~~ $9.95

More bubble fun on a smaller scale.

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01/25/2026 05:47 am GMT

Little Kids Fubbles No-Spill Big Bubble Bucket in Pink for Multi-Child Play, Made in the USA

$19.00

Nothing can add a little fun like sitting in a lawn chair on a sunny day, blowing bubbles!

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01/25/2026 05:38 am GMT

Kids Sticker Book, Reusable Sticker Activity Books for Kids Ages 3-5, 14 Scenes Spiral Coloring Book, Toddler Flight Essentials Ages 4-8, Car Activities for Kids, Travel Toddler Essentials Ages 8-12.

$14.99

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01/25/2026 05:46 am GMT

Aleene's Felt Adhesive Fabric Glue, White (43234)

~~$5.99~~ $5.06

You'll need this glue for felt projects! It is really easy to use.

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12/09/2025 10:04 pm GMT

CiyvoLyeen Wild Birds Sewing Craft Kit Animal Sewing Kit for Boys and Girls Beginners Set of 12 Sewing Projects Gift for Kids

$26.99

I loved making these bird and hanging them from the branches of an indoor house plant. They are fun and easy. The eyes and features are supposed to be self-stick, but they don't tend to come off easily, so I just bought a bottle of felt glue to make it easier.

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01/25/2026 05:39 am GMT

CiyvoLyeen Puppy Craft Kit Kids DIY Crafting and Sewing Set Dog Stuffed Animal Felt Plushie for Girls and Boys Educational Beginners Sewing Set Sewing Kits for Kids Age 8 9 10 11 12

$28.99

The holes are precut, and these woodland creatures are fun for all ages. You will want to buy a bottle of felt glue to aid with sticking on eyes and felt-on-felt features. Lots of fun for all!

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12/10/2025 07:01 am GMT

Tell Me More: A Conversation Starter Game of Questions to Deepen Connection

$16.95

Great conversation starters!

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12/09/2025 10:05 pm GMT

Easy to Hold!

New Amazon Kindle (16 GB) - Lightest and most compact Kindle, with glare-free display, faster page turns, adjustable front light, and long battery life - Matcha

$109.99

This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.

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12/09/2025 10:04 pm GMT

Choose Joy

Choosing joy in the midst of life’s challenges and among life’s darkest hours isn’t just naive optimism. Joy is, in itself, an act of ongoing resistance – resistance to the near-overwhelmingness that threatens to lead us wandering in our journey through life, down the darkest paths.

I could choose anguish and walk through life with leaden footsteps, seeing only gray clouds, dusty roads, and empty faces, focusing on the sadness that threatens to consume all of us, if we let it.

I could choose despair and find myself without hope or any expectation of improvement. I could let hopelessness guide my days, and let loneliness overwhelm me, even in a crowded room.

Choosing joy is direct defiance against despair and hopelessness. Once you have chosen joy, you will see it everywhere – in a butterfly fluttering by, in the calm sunshine of the early morning, in a tiny, defiant flower thriving amidst a pavement crack – you will find joy even amidst the gravel and dust of everyday life.

I, for one, choose intellect over ignorance. I choose hope over desperation. I choose composure over chaos. I choose to smile rather than to grimace in pain.

There is nothing false in these choices. They are not a denial of my life’s reality. They are simply an adjustment to my reaction when faced with life’s trials.

Tragedies, struggles, hardships and challenges affect us all. We do not choose them, and we cannot avoid them. We can only choose how we react to them, and how we respond.

My response to life’s calamities is steady and enduring. Quite simply, I choose joy.

What is a Flare?

If you have a chronic illness, such as Psoriatic Arthritis, Rheumatoid Arthritis, Lupus, Inflammatory Bowel Disease, etc., you may have heard the term “flare” mentioned. But what is a flare?

A flare is when your chronic illness symptoms are significantly higher than is typical “for you” on a daily basis. I’ll use my psoriatic arthritis (PsA) as an example. My biologic keeps my PsA well controlled, although I still have some pain, stiffness, and swelling, I am able to function in day-to-day life. (Maybe not well, but I can basically function.)

When I have a flare (which isn’t often) my fingers become so stiff and swollen that I cannot pick up a pen, dial my phone, hold my phone, or use my computer mouse. In a flare, my back stiffens to the point I am basically unable to get out of bed or walk.

When having a flare, I contact my rheumatologist for additional medication (such as a prednisone taper) or my pain management doctor for additional medication (such as strong muscle relaxers or oxy or morphine to help deal with the extreme pain.) Technically, to be a flare, the pain or immobility of whatever joints or body parts are involved has to be significantly more than your day-to-day pain or immobility.

Kit Kat Kellie

This month, I was hospitalized for 15 days due to bacteremia, which is when you get an infection in your blood stream. It is very dangerous, because you can end up with sepsis, which is life-threatening.

The most likely cause, in my case, was my PICC line. So, they had to remove it and send it off to be cultured. The tip was not infected, which is very unusual, so we still aren’t exactly sure what caused this infection

Since they removed the PICC line in my right arm, the next step was to put a new one in my left arm. We faced a problem though. I didn’t have a single vein in my left arm that was wide enough to support a PICC line.

So, instead, I have what is called a “tunneled chest inter-jugular double lumen PICC line.” That sure is a mouthful! It means my new PICC line was tunneled under my skin across my chest, and it is located right above my right breast. It really hurt when they tunneled it. It was a minor surgical procedure.

This is a very inconvenient position. I can’t wear bra because it would put pressure on the PICC line. The lumens either have to come out over the top of clothes or through the underarm, neither of which looks good or feels good.

You have to use stick deoderant because gels or roll-ons will get on the lumens. You can’t face forward in the shower anymore, because you’ll get the PICC wet. Baths and hot tubs are out of the question. And of course, no swimming.

Showering now means sitting on a shower chair with my back to the shower stream, with plastic piecnes over my PICC, and a hairdressing cape (like they use when you have your hair died, when you have it rinsed out) which is velcroed tightly around my neck. Any place covered by this cape, I have to was later with just a wash cloth, because I can’t risk getting the PICC line wet.

My stay at the hospital was far from ideal. The various doctors didn’t seem to communication with each other or the nurses, which lead to me not getting any TPN for over 10 nights! Meds were never on time, and two of my meds have to be timed extremely carefully, which caused some withdrawal symptoms. I won’t go into it further, but it was not a good experience.

I could go on and on about all the things that went wrong during my stay. I could probably write a small book. But that is not what I want to talk about. Just as there were a couple of horrible nurses, there were also many fabulous nurses.

My third day there, a nurse came into my room at shift change. Her face lit up and she cried out “Ms. Jan! Is that you?” It was Nurse Kellie. She took care of me at a different hospital several years ago. I instantly recognized her and was so happy to see her. She is one of the great nurses.

Later that shift, she was giving me meds, and I told her, because they didn’t have TPN for me, I was getting a Dextrose drip and I had to try to eat food orally (which is very difficult when you don’t do that often.) I told her how I wished I had some kind of chocolate bar.

She smiled and said, if you could have any kind of chocolate bar, what kind would it be? I replied, oh that is easy. It would be a Kit Kat bar.

The day went on, and eventually it was the end of her 16-hour shift. As she was introducing me to the next shift nurse, she very quietly placed a Kit Kat bar on my hospital table, with the biggest smile. I couldn’t thank her enough. She had gone down to the cafeteria and bought that Kit Kat for me. And I savored every bite of it. That Kit Kat bar was more than a chocolate bar — it let me know that someone cared about me. At that point, I really needed that!

She was my nurse several more times during my stay, which made me glad because not only was she officiant and responsible, I knew how much she cared about me. It makes a huge difference!

And on the day I finally checked out of the hospital, she was just starting a shift and was at the nurses station. She saw them wheeling me out, and ran over, waving goodbye and saying “Goodbye Ms. Jan! I hope the next time I see you, it won’t be in a hospital!”

Nurse Kellie will always be remembered to me at least, as Kit Kat Kellie – the nurse who cared.

Pleasantly Persistent

My RBC, hemoglobin and hematacrit have been very low for over 8 months now. Having had chemo done twice in the past 2 ½ years easily explains that, but it is very hard to live any kind of life when these three items are so low.

It leaves you tired, exhausted, sick-to-your-stomach, unable to keep food down, and just feeling like you need to sleep 24/7. If you even sit down in a stiff-back chair, you’ll fall asleep. It can also make your blood pressure very low. One day, mine was 74/43! (and yes, I immediately went to the hospital for that.) It isn’t a great quality of life when you spend 20+ hours a day sleeping!

My RBC is 3.04 which is very low. In range is 3.8-5.10.

My hemoglobin is 8.2 which is dangerously low. In range is 11.7-15.5.

My hematacrit is also low. It is 27.4. In range is 35-45.

I have severe anemia, but not iron-deficient anemia that we typically think of. I have no iron deficiency.

I often get pernicous anemia (a lack of vitamins D and B-12,) because I can’t absorb them due to having short bowel syndrome, but I get injections of these daily through my TPN.

My anemia is pure and simple a lack of red blood cells. This often happens after intensive chemo, but mine is not resolving. There is a good chance my bone marrow isn’t producing enough red blood cells, and the ones that are being produced are the wrong shape and size.

My kidney function is less than half what it was 2 weeks ago (which is very scary.)

My Creatinine is very high (much higher than usual) which shows that something is taxing my liver.

There is a medication that can help me. I’d need to get an injection at a hematology center every two weeks, until my blood levels come up. I’ve been trying to get into one and get set up for months. I’ve been there twice already, but they didn’t feel it was “that bad” and wanted to “wait and see.”

They made my next appointment for the end of October! (which is two months from now!) I did a lot of praying and came to the conclusion that I needed to put on my “pleasantly persistent” persona.

I sent a note to them saying I’m not sure I’ll still be here in 2 months for that next appointment, that I’ve already been in the ER on three different occasions and was hospitalized for 15 days all in the past month, that I am weak and shaky, I’m in the bed 18-22 hours per day, and this isn’t much of a life. I reiterated that I need help NOW, not two months from now. I ended it by simply saying “Please help me!”

I think it hit a chord with them, because the very next day, they called and worked me in, did all the labs they needed to do to prove to the insurance company that I did need this insanely expensive treatment, and I’m now set up for my first four treatments!

“Pleasant persistence” is a very powerful attribute.

UPDATE: After my first Pro Crit treatment, I started to feel better. My labs increased a bit. I felt less tired and less fatigued. Now, three months later, I feel like a new person! My RBC, Hemoglobin, and Hematocrit are still low, but not “scary” low anymore.

Being your own advocate (or being the squeaky wheel) is essential in our healthcare system. I’ve always found that the key is to stay pleasant (pleasantly persistent). Yelling, shouting, and threatening don’t tend to get you anywhere (and besides, those attributes are just not in my nature) but if you stay pleasant, yet insistent, I’ve found you can effectively advocate for yourself and get what you need.

Count Your Blessings

Today was a really tough day for me physically. I was weak, dizzy, nauseous all day, and my balance was really off. And I had a blood lab, a doctor’s appointment, and then my cleaning ladies came (and we all know you have to straighten up a bit before they come.) I was shaking so hard and my vision was blurry. I wasn’t sure I could make it through the day, but I was determined to push myself to try.

But here is the other side of things. I had a doctor’s appt at the time my home health nurse usually comes to my house. She rescheduled my home health to 7am this morning, so I got it done early, and it was done and over with way before my doctor’s appt. What a blessing!

My ride (a volunteer from the American Cancer Society’s Road to Recovery Program) showed up right on time to pick me up. He’s driven for me once before, and he is just a delightful gentleman (who has Multiple Myeloma, a type of blood cancer. He’s had it for 19 years, and does stem cell therapy to keep on keeping on.) He drives as a way of “giving back” to the cancer community. He is a great driver. He likes to have conversations while we drive to the appt. He waits in the waiting room the whole time (reading a book on his phone) and then all the way back we have nice conversations. What a wonderful blessing! We have the nicest chats, and very little of it is about cancer. It is so nice to talk about anything other than cancer!

My cleaning ladies came early today, right after I got home from my doctor’s appt. (Their boss texted and asked me if that would be okay.) I felt so sick, and all I wanted to do when I got home was crawl into bed and rest. Those wonderful cleaning ladies immediate stripped the bed and put on fresh sheets, so I could lay down in my own bed and rest! Wasn’t that thoughtful of them? I told them they could vacuum around the bed and I wouldn’t even notice, and I certainly was true to my word. I’m amazed by their kindness. I hadn’t even asked, but they just realized I wasn’t my usual upbeat self and that I didn’t feel good. What a blessing that was! Little things mean so much!

When I woke up from resting, I felt a bit better. Then we had a huge rainstorm, and I just love the sounds and sights of storms. It takes me back to when I was a small child. When there was thunder and lightning, my dad would call me over to stand next to him by the huge picture window in the front of the house. He’d always say, “Come on, Janice. Let’s watch all the pretty lights in the sky.” Because of him, I’ve never been afraid of thunderstorms. And to this day, I find myself standing at the window, looking for all the pretty lights. What a blessing that was. Somehow, my dad knew just how to take the “scary” part away, and just see the beauty in loud crashing thunder and crackling lightning.

I guess my point is, I could have grumbled all day about things that didn’t go my way, but truth be told, there were more blessings today than I could even imagine until I wrote them down and counted them.

Count your blessings, name them all one by one.
Count your many blessings, see what God has done!

Products That Can Help You While Recovering at Home

Once you get home, there are many items that can help you with your recovery, such as adjustable beds, assistive devices, bidets, bedside commodes, and specialized pillows and wedges.

OUMEE 60 PCS Commode Liners with 60 Absorbent Pads, Bedside Commode Liners for Commode Bucket, Disposable Commode Liners for Adults, Portable & Leak-Proof Potty Chair Liners(60Bags+60Pads)

~~$24.99~~ $21.99

These pads and liners make keeping a bedside commode so much easier. They also reduce smells that accumulate overnight or in-between being emptied.

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01/25/2026 05:51 am GMT
Drive Medical RTL11158KDR Folding Steel Bedside Commode Chair, Portable Toilet, 350 Pound Weight Capacity with 7.5 Qt. Bucket, Grey

$42.98

This bedside commode is inexpensive yet sturdy, and able to accommodate a person up to 350 lbs. During recovery, using a bedside commode is so much safer than taking risky walks in the dark to the bathroom.

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01/25/2026 05:48 am GMT
GentleBoost Uplift Raised Toilet Seat with Handles, Padded Bedside Commode Chair for Toilet, Elderly Assistance Products, Bathroom Aid, Handicap, Elevevated, Adjustable with Arms, for Seniors (Blue)

$239.00

This padded bedside commode offers a gentle lift for those who have trouble getting up from a seated position without assistance.

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01/25/2026 05:47 am GMT
Misiki Cervical Memory Foam Pillow, Orthopedic Pillow Contour Pillow for Neck Pain, Cervical Ergonomic Pillow for Side Sleepers, Back and Stomach Sleep

$32.40

I use this pillow because I have ankylosing spondylitis in my cervical spine. This special pillow cradles your neck in comfort and support. It is perfect for back sleepers and side sleepers. It has a cover that easily zips off to be washed.

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01/25/2026 05:39 am GMT
iTouchless 13 Gallon Kitchen Trash Can with Lid and Odor Filter, Motion Sensor Stainless Steel Rectangular Trashcan for Home Office Work Bedroom Living Room Garage Large Capacity Slim Wastebasket

~~$89.99~~ $72.99

This no-touch trash can is the perfect size for the kitchen or living area. You can easily throw things away without touching the can, and it self-closes when you are finished. It also has a odor filter to help eliminate odors. I especially like it because it keeps my dog out of the trash!

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01/25/2026 05:40 am GMT
ELENKER Upright Walker, Stand Up Folding Rollator Walker Back Erect Rolling Mobility Walking Aid with Seat, Padded Armrests for Seniors and Adults, White

~~$209.99~~ $179.99

This upright rollator is wonderful for helping with mobility and balance, while keeping you in an upright position. Regular walkers and rollators lead to the user becoming hunched-over, but an upright rollator keeps your back nice and straight, and keeps you with good posture. I've had mine since 2020 and it is still working great!

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01/25/2026 05:40 am GMT
MP MOZZPAK Vomit Bags 24 Pack 1000ml Emesis Bags Leak Resistant, Medical Grade, Portable, Disposable Barf, Puke, Throw Up, Nausea Bags for Travel Motion Sickness (Blue, Pack of 24)

~~$12.99~~ $9.99

These compact emesis bags were the most essential thing I needed (and used) during radiation and chemo! I always kept one in my bag, in my car, and much of the time, in my hand!

I can't tell you how many times this kept me from throwing up in an Uber or friend's car while traveling to or from the cancer center, or what a relief it was to have one of these on my bedside table for those times you need one and there is no time to get up and run to the bathroom! Trust me, these are essential while going through chemo and radiation.

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12/09/2025 06:07 pm GMT
Pochik Sitz Bath, Sitz Bath for Hemorrhoids, Sitz Bath for Toilet Seat, Postpartum Care, Sits Bath Kit for Women, Collapsible, Flusher Hose, Drain Holes, Wider Seating Area, Deeper Bowl

$19.99

A sitz bath is so helpful in reducing the pain from hemorrhoids and anal itchiness and sensitivity. This one can collapse for smaller storage. While the description doesn't say it fits an American oval toilet seat, it does. The squeeze bulb can be used to push water to just the right place. A soak in a warm sitz bath can provide so much relief.

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01/25/2026 05:52 am GMT
Sitz Bath Salts Mix+ Hemorrhoid Relief 20-in-1 Concentrate Makes 15 Soothing Soaks Toilet Seat Basin. Epsom Salt with Essential Oils. Made in U.S.A.

~~$25.00~~ $19.99

Add a small amount of these Sitz Bath Salts for Hemorrhoids to warm water in your sitz bath and soak for about 10 minutes. You can't imagine how much pain it will relieve. This is the best brand I've found so far.

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01/25/2026 05:48 am GMT
MED PRIDE NitriPride Nitrile-Vinyl Blend Exam Gloves, Medium 100 - Powder Free, Latex Free & Rubber Free - Single Use Non-Sterile Protective Gloves for Medical Use, Cooking, Cleaning & More

$7.99

Exam gloves are essential when using anal/rectal suppositories or for applying ointments. They are especially necessary if you are dealing with any cream that is made of zinc oxide (such as Calmoseptine or Destin) because otherwise, it is really difficult to wash the cream off of your fingers (it resists water and moisture.) Gloves just make it so much easier.

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01/25/2026 05:50 am GMT
SteadStyle Gifts for Women or Men - Get Well Soon Blanket, Feel Better After Surgery Gifts for Sick Women, Thinking of You Gifts, Inspirational Gifts Blanket for Friend Sister, Sympathy Gifts for Her

$23.99

This teal blanket makes a great gift for someone facing cervical cancer. It is great to use during chemo, or at home during recovery.

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12/10/2025 07:00 am GMT
mDesign Slim Metal Rectangle 1.3 Gallon/5 Liter Trash Can with Step Pedal, Easy-Close Lid, Removable Liner - Narrow Wastebasket Garbage Container Bin for Bathroom, Bedroom, Kitchen - Matte Cream/Beige

$34.99

This self-opening and closing bathroom trash can opens by motion, and closes tightly afterwards. It is a small size, and it keeps unsightly trash (such as wipes, used gloves, used incontinence pads, etc.) out of sight. I got one of these for each bathroom specifically to make sure my dog didn't get into the trash and causes a mess.

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01/25/2026 05:40 am GMT
LUXE Bidet NEO 120 - Self-Cleaning Nozzle, Fresh Water Non-Electric Bidet Attachment for Toilet Seat, Adjustable Water Pressure, Rear Wash (White)

$39.99

With Crohn's or IBD, while recovering from hip replacement surgeries, and during medical treatment for cancer, a bidet is an essential piece of equipment. Easy to add to your toilet, and easy to use, a bidet cleans your bottom with a stream of water and helps reduce toilet paper irritation. It also reduces the need for a twisting motion (to wipe.)

If you've never used a bidet, you don't know what you are missing. Thisis a basic model that uses room temperature water, but they also come in deluxe models that use heated water, and ones that have two streams -- one for your bottom and one for women during their menstrual cycle. Once you have a bidet, you'll never understand how you did without one!

(This bidgt is easy to install. I didn't need a plumber, my retired neighbor came over and installed it in less than 30 minutes.)

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01/25/2026 05:41 am GMT
Kӧlbs Bed Wedge Pillow with Memory Foam Top | Chic Jacquard Cover | Wedge Pillow for Sleeping and Acid Reflux, Heartburn, GERD

$43.99

A wedge can help you get more comfortable in bed while recovering from a variety of surgeries. It can also help with GI issues such as GERD. This memory foam wedge is extremely comfortable.

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01/25/2026 05:38 am GMT
Sven & Son Bliss Adjustable Bed Base-Frame + 14 inch Hybrid Spring Matt (Medium Soft), Head and Foot Lift, Lumbar, Pillow-Tilt, Massage, Under-Bed Lights, USB - Split King

$2,894.95

This King size split bed allows you and your partner to sleep together, while also being able to adjust each side of the bed to meet your individual needs. Unlike most advertised on Amazon, this is both a split base and split mattresses that exactly fit the frame.

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01/25/2026 05:51 am GMT
Couch Cup Holder Pillow, Couch Drinks Remotes Holder for Center of Couch, for Sofa, Bed, RV, Car (Brown)

~~$29.99~~ $23.99

This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.

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01/25/2026 05:47 am GMT
Longering 4PCS Orthopedic Bed Wedge Pillow Set for Sleeping - Wedge Pillows for After Surgery for Body Neck Back and Leg Pain Relief - Triangle Pillow Wedge for Sleeping & Acid Reflux & GERD &...

This variety of bed wedges can help you stay comfortable while resting, reading in bed, sitting up to watch TV or use a laptop, to raise your legs higher, when needed, etc. These can be used on a regular bed, on your sofa, or many other types of furniture. The quality memory foam can reduce body pain, improve blood circulation, help with low blood pressure, and relieve acid reflux. The removable zipper covers are easy to remove and launder.

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Platinum Health, GentleBoost Power Uplift Commode Chair for Toilet & Shower, Elderly Assistance Products, Assist Bedside Chair with Padded Seat, Back & Handles, Adjustable with Toilet Safety R...

~~$399.00~~ $357.00

This commode seat or shower seat has a remote control to help those who can't lift themselves. This device is very helpful for caregivers, and keeps them from putting out their backs.

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01/25/2026 05:54 am GMT
Dr.WhitZard Blanket Lifter for Feet Aluminum Height Adjustable Blanket Support Lifter for Leg Knee Ankle Toes Pain Surgery Recovery Blanket Support Holder Hospital Bed Cradle Assistance Accessories

This easy to assemble blanket lift (also called a blanket bridge) keeps the weight of the blanket or comforter off of your feet and legs. It keeps your legs and feet from getting trapped under the weight of comforter, or twisted-up in the sheets and blankets.

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Best Choice Products PU Leather Electric Power Lift Chair, Recliner Massage Chair, Adjustable Furniture for Back, Legs w/ 3 Positions, USB Port, Heat, Cupholders, Easy-to-Reach Side Button - Brown

~~$499.99~~ $389.99

This recliner has electric lift, heat, massage, and cup holders. Comfort and convenience, all in one chair!

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01/25/2026 05:40 am GMT
Uccello Electric Safety Kettle | Black Tipper Base Included | Effortless Pour Every Time | Daily Living Drinking Aid For Disabled and Seniors | 1.5 Liters | Black and White

$85.00

If you are a tea drinker, this kettle is for you! No lifting! No holding it steady to pour! No spills! You'll love it!

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01/25/2026 05:42 am GMT
The Original Under Cabinet Jar Opener - Effortless for Weak Hands & Seniors with Arthritis - Open Any Size Jar & Bottle - Made in USA

$19.95

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01/25/2026 05:39 am GMT
Jar and Bottle Opener for Seniors with Arthritis, Multifunctional Retractable Bottle Opener Magnetic Can Opener, Jar Grippers for Opening Jars, Jar and Bottle Opener for Weak Hands (White)

$6.99

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01/25/2026 05:39 am GMT
Farberware Edgekeeper 6-Inch Cleaver Knife with Self-Sharpening Blade Cover, High Carbon-Stainless Steel Kitchen Knife with Ergonomic Handle, Razor-Sharp Knife, Black

$17.99

I have pretty severe damage to my hands (psoriatic arthritis and neuropathy) and I use this cleaver to cut meat easily. It is incredible. I can cut a 2-3 inch thick piece of beef without a struggle, and the knife cutter sharpens the blade each time you use it.

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12/09/2025 06:07 pm GMT
New Amazon Kindle (16 GB) - Lightest and most compact Kindle, with glare-free display, faster page turns, adjustable front light, and long battery life - Matcha

$109.99

This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.

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12/09/2025 10:04 pm GMT

Being Homebound in an Empty House

I used to be a teacher.
Before that, I was a city supervisor.
Here and there, I’ve been a writer.

Now, I am a nothing.
I sit in a house, day-in and day-out
without anyone to talk to.

I live for Mondays, when the home nurse
comes to take my blood work and change
my PICC Line dressing
because it is 20 minutes of conversation
I don’t typically get.

My hobbies are gone.
My job and volunteer work are gone.
I’m completely unreliable
because I never know if I’ll have the energy
or ability to do anything.

I’m so hungry sometimes
while food spoils in the fridge
because I don’t have the strength or
the energy to actually cook it.

Anything I try to make my life better
fails
just like me.
A complete and total failure
sitting alone day after day.

Be patient, they tell me
Your body needs time to heal
as months and months pass
and very little changes.

The years pass
and very little changes.
And all I can say is,
“I used to be . . .”

A Different Kind of Exclusion

When you have a chronic illness or are living with multiple life-changing conditions, it impacts every aspect of your life. Progressive disabilities are thieves who steal our inclusion in daily life, as well. Things you once did and enjoyed slowly and relentlessly are stolen from you, until even with adaptation they merely bring you frustration and irritation instead of the joy they once contained.

Your friends and former colleagues drift away because they don’t know what to say or what to do. Phone calls, video calls, and even social media posts and messages grow more and more difficult because it is hard for people who care about you to see you in pain, especially when there is nothing that can be done about it. Communication between you and former dear friends becomes infrequent, shorter in duration, further apart in frequency, and often ceases altogether.

It becomes harder and harder for you to maintain friendships and relationships as your world becomes smaller, and the only events or experiences you have to share are medical or pain-related ones. While your friends discuss the activities in their lives, you really have nothing to add unless you discuss your illness, and that gets tiresome to all involved.

While they are happily telling you about a concert they attended last week, you are all too aware that you haven’t been to a concert in several years. As they tell you about all the goings-on at work, you are reminded that you are no longer able to work, and very well may never be able to work again. As you listen to them tell you about a recent vacation, it saddens you to recall that you are no longer able to enjoy such holidays. If they talk about a wonderful restaurant they recently visited, you regretfully remember that you are unable to eat those types of food anymore, that you can’t have any alcoholic drinks anymore, and that even sweet treats are something from which you must abstain. It doesn’t make for an enjoyable conversation for either person.

When you are dealing with a variety of issues (such as sun sensitivity, food restrictions, urinary incontinence, fecal incontinence, overwhelming fatigue, blurry vision that prevents you from driving, extreme nausea, intractable pain, taking strong medications that leave you drowsy and unable to logically converse, etc.) it can make social events all but impossible.

The unexpected nature of many chronic illnesses can cause you to frequently have to cancel plans, even though you really want to participate. When you frequently cancel, or when it takes a herculean effort to include you, people stop asking you, and your social life can become non-existent.

You may have to cancel because you are extremely unwell that day, because of an unplanned hospitalization or medical treatment, or an unexpected reaction to a new medication. Sometimes, you have to cancel for reasons you really don’t want to share – like the lack of a handicapped restroom where you are going, a long walk from the parking lot to the event site, or the realization that the event is held in a historic building and you’d have to climb stairs, which you can’t do.

When the world is not as accessible as it needs to be, when illness takes your strength and energy, and chronic fatigue and malaise leave your thoughts muddled and confused, it is difficult to feel included and hard to be involved. The barriers to inclusion sometimes seem insurmountable and leave you with a quality of life that you wouldn’t wish on your worst enemy. How many times can you be the scorekeeper in the kickball game of life?

The Unreliability of Wellness

I tend to be a person who thinks of what I can do rather than what I can’t do. I tend to look for the joy in situations rather than let myself be unhappy. Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do. I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do. Then I have to stop simply to spare myself from the magnitude of it.

First, there are the things I have never been able to do. These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these.

Second, there are the things I once could do, but no longer can. This list is so much longer. These leave a sorrowful place in my heart. I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job. It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent. The list is so long that I’ve only been able to touch upon the substantiality of it.

You learn to lie about how you are doing. People ask how you are doing, but they don’t really want to know unless it is mostly good news. I can’t blame them for that – it is human nature.

I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.” Or “Well, I can’t complain. Well, I could, but who wants to hear that?” with a well-timed laugh. It ends the query and allows me to quickly change the subject. How many times can you tell a friend that you are not doing well, or that you are getting worse? “How are you?” isn’t really a question in our society. It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.

We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc. At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us. Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet.

For others of us, what makes us feel like an outsider cannot be fixed or changed. People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.

There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.” It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world. In my mind, I despise this poem. While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too. He still doesn’t have any shoes!

I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them. Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition.

When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential. I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.

For most of us, others barely notice what bothers us. But for a few of us, our issues are hard to ignore. Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns. We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk. We look away and then get away as quickly (and as unnoticeably) as we can. (And later, we feel very bad about having done that.)

While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider. Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase.

Many times, our loved ones react in strange ways to our progressive medical and physical changes. Some blame us as if we caused it to happen. Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy.

Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit. And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.) Often, it can be as if our loved one blames us if their efforts don’t lead to a cure. This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much.

While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness. Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy. For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion. We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.

The Financial Burdens of Those with Chronic Illnesses and Progressive Disabilities

Current research shows that a household with a disabled adult has 28 percent more expenses than a non-disabled adult household to have the same standard of living, which is currently an average of an additional $17,690 a year. (Source: National Disability Institute, The Extra Costs of Living with a Disability in the U.S., 2020.) This doesn’t include the extra expense for households where an adult is in active treatment for a life-threatening disease, such as cancer or lung disease.

People with progressive disabilities and/or treatment for active serious illnesses, can also face bankrupting medical expenses even with excellent insurance, and progressive disabilities and life-threatening illnesses often result in the person having to be underemployed, or unable to earn any income at all. Even for those who turn to disability (SSDI) the amount is less than 40% of their prior income, while their expenses are significantly more than when they were able to work.

Do me a favor? Write down your annual income. Now, multiply it by 0.40. That will give you 40% of your current annual income. Now take that amount and multiply it by 0.28. You will need to subtract that amount from the 40% of your previous income. That will account for the extra expenses that a disabled person encounters (not an ill patient, just a disabled adult.) Now divide that amount by 12. That would be your base income as a disabled adult. (There would also be other expenses, such as insurance premiums, co-pays, and non-covered medications, but we’ll leave that alone for this example.)

So, let’s say you typically earn about $50,000 per year from working. That means that 40% of that is $20,000. That would leave you $1,667 per month. Even without accounting for the 28 percent additional costs that disabled adults incur, could you live on $1,667? Would that cover your mortgage/rent, car, gas, car repairs, home/renters’ insurance, health insurance, taxes, medical co-pays, non-covered medications, dental visits, eye exams and glasses, groceries, wi-fi, basic streaming, etc.? What if you have a pet? Would you be able to cover vet costs, dog/cat food, etc.? So instead of having $4,167 per month as an employed person, you would have to live on $1,667. Could you do that? Would you still be able to do the things your friend that are in your previous earning’s bracket do, or would you no longer have the funds to participate? Would you struggle to keep your home or pay your rent, to pay your property taxes, or pay your car insurance?

This loss of income, and constant financial struggle, leads to not being able to live the lifestyle the person was accustomed to. The lack of money often leads to further isolation as the person can no longer afford things like a night out, sporting events, meals at restaurants, or participating in gift giving. Even being invited to something as innocuous as a potluck is difficult when you are food insecure, especially when none of your friends or colleagues can even conceive of being in that situation, based on your former lifestyle.

The change in lifestyle caused by lack of mobility, the effects of strong medications, hospitalizations, medical procedures, pain and fatigue are only the tip of the iceberg when it comes to the isolation, anxiety, and loneliness of having a chronic illness or a progressive disability. The compounding effects of financial instability, food and medication insecurity, and medical treatment costs leads to stress and distress that causes trauma and anxiety which lead to even more isolation and loneliness. The financial burdens of chronic illnesses and progressive disabilities are more complex and far-reaching than most people realize.

And Just Like That, It Was Gone.

I was born with a disability that progressed as I grew and aged. My loss of mobility was much greater than was ever expected. Nineteen surgical reconstructions helped slow it down a bit, but nothing could stop the eventual loss of my mobility.

I had a career I loved. My disability’s progression ended my ability to do that job (even with accommodations, which were not an available option back when this happened.) I had a master’s degree in my field, 12 years of successful experience, and had worked my way from an entry-level position to a top management position in a relatively short time.

And just like that, it was gone. I couldn’t physically do it anymore.

Losing your mobility is difficult. Losing your job at the same time (which also meant losing my health insurance, at a time when a disabled person couldn’t get health insurance outside of a workplace) was devastating.

That was over 25 years ago. I took some classes, got certified in another field that I could physically do, and began a new career. Again, it was a job I loved. And then, after 20 years in my new career, once again, a physical issue made me unable to continue at that job, or any job.

Inflammatory arthritis and ankylosing spondylitis left me almost bedridden and in so much pain. Just when I thought it couldn’t get worse, I was diagnosed with invasive cancer.

Throughout all of this, adaptability was my best ally. A bit lost without the ability to work anymore, I took the chance to write and publish a book, which had been a dream of mine since I was a teen.

When your circumstances alter your life, you really only have two options — let it destroy you or embrace adaptability.

Products That Make Life Easier with Crohn’s Disease and Inflammatory Bowel Disease (IBD)

Crohn’s Disease and IBD can make life very difficult. Gut pain, bloating, anal discharge, urgency, and fecal incontinence are all difficult subjects to discuss. Here is a list of items that have made my life with Crohn’s Disease a bit easier.

Here are some items I personally recommended that can help make your life with Crohn’s or IBD so much easier. I have personally purchased and/or used every item I recommend. These are items that help me get through my day with Crohn’s.

By means of full disclosure, I may earn a small commission from Amazon for links to any products or services from this website.

Ensure Max Protein Nutrition Shake with 30g of Protein, 1g of Sugar, High Protein Shake, French Vanilla, Liquid, 11 fl oz (Pack of 12)

~~$37.41~~ $27.97

Ensure Max Protein drinks are great when you are having trouble eating and need both calories and protein. They come in several flavors, have only 1 gram of sugar, and 30 grams of protein. I always keep a few in the fridge for those days I just don't feel like eating, so I don't get shaky or weak.

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12/10/2025 07:01 am GMT
DripDrop Hydration - Fruit Punch - Electrolyte Drink Mix Single Serve Hydration Powder Packets | Non-GMO, Gluten Free, Vegan | 32 Sticks

~~$35.99~~ $32.99

DripDrop electrolyte powder can really help you stay hydrated during medical issues and recoveries. Both my cancer and GI nutritionists recommended it, and it is available in a variety of flavors. Fruit Punch is my favorite, with Grape as a close second.

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01/25/2026 05:53 am GMT
DripDrop Hydration - Bold Variety Pack - Electrolyte Drink Mix Single Serve Hydration Powder Packets - Watermelon, Berry, Lemon, Orange | Non-GMO, Gluten Free, Vegan | 32 Sticks

~~$35.99~~ $32.99

When chronic diarrhea strikes, can dehydration or electrolyte imbalances be far behind? (Pun intended.) DripDrop has fabulous flavors that you mix with water to increase your hydration. This electrolyte powder comes in a variety of great flavors!

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12/10/2025 07:01 am GMT
MP MOZZPAK Vomit Bags 24 Pack 1000ml Emesis Bags Leak Resistant, Medical Grade, Portable, Disposable Barf, Puke, Throw Up, Nausea Bags for Travel Motion Sickness (Blue, Pack of 24)

~~$12.99~~ $9.99

These compact emesis bags were the most essential thing I needed (and used) during radiation and chemo! I always kept one in my bag, in my car, and much of the time, in my hand!

I can't tell you how many times this kept me from throwing up in an Uber or friend's car while traveling to or from the cancer center, or what a relief it was to have one of these on my bedside table for those times you need one and there is no time to get up and run to the bathroom! Trust me, these are essential while going through chemo and radiation.

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12/09/2025 06:07 pm GMT
Pochik Sitz Bath, Sitz Bath for Hemorrhoids, Sitz Bath for Toilet Seat, Postpartum Care, Sits Bath Kit for Women, Collapsible, Flusher Hose, Drain Holes, Wider Seating Area, Deeper Bowl

$19.99

A sitz bath is so helpful in reducing the pain from hemorrhoids and anal itchiness and sensitivity. This one can collapse for smaller storage. While the description doesn't say it fits an American oval toilet seat, it does. The squeeze bulb can be used to push water to just the right place. A soak in a warm sitz bath can provide so much relief.

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01/25/2026 05:52 am GMT
Sitz Bath Salts Mix+ Hemorrhoid Relief 20-in-1 Concentrate Makes 15 Soothing Soaks Toilet Seat Basin. Epsom Salt with Essential Oils. Made in U.S.A.

~~$25.00~~ $19.99

Add a small amount of these Sitz Bath Salts for Hemorrhoids to warm water in your sitz bath and soak for about 10 minutes. You can't imagine how much pain it will relieve. This is the best brand I've found so far.

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01/25/2026 05:48 am GMT
Kӧlbs Bed Wedge Pillow with Memory Foam Top | Chic Jacquard Cover | Wedge Pillow for Sleeping and Acid Reflux, Heartburn, GERD

$43.99

A wedge can help you get more comfortable in bed while recovering from a variety of surgeries. It can also help with GI issues such as GERD. This memory foam wedge is extremely comfortable.

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01/25/2026 05:38 am GMT
FriCARE Blue Stethoscope - Stethoscopes for Nurses Nursing Students Gifts - Home Assessment Practice Kit, StethoMedic Essentials, Excellent Sound Performance, Sturdy Estetoscopio Replacement, 31 inch

$19.99

Why a stethoscope? You can use it to listen to your bowel sounds in your gut. You can tell if they are faint and slow, or loud and gurgling. The most important reason to have one? If you hear nothing, then your bowels may not be moving at all. This could be a sign that things are blocked and that you may even have a possible partial or full obstruction. If nothing else, this stethoscope (which is long enough to reach my belly) gives me some peace of mind.

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01/25/2026 05:55 am GMT
MED PRIDE NitriPride Nitrile-Vinyl Blend Exam Gloves, Medium 100 - Powder Free, Latex Free & Rubber Free - Single Use Non-Sterile Protective Gloves for Medical Use, Cooking, Cleaning & More

$7.99

Exam gloves are essential when using anal/rectal suppositories or for applying ointments. They are especially necessary if you are dealing with any cream that is made of zinc oxide (such as Calmoseptine or Destin) because otherwise, it is really difficult to wash the cream off of your fingers (it resists water and moisture.) Gloves just make it so much easier.

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01/25/2026 05:50 am GMT
Embracing Life's Limitations: Letting Go of Who You Were Supposed to Be

0

(The Kindle Version is $0.00 if you have Kindle Unlimited, or $3.95 if you don't.) Here's a link to my first book, Embracing Life's Limitations: Letting Go of Who You Were Supposed to Be. It is a story of growing up with bilateral hip dysplasia, living with psoriatic arthritis and ankylosing spondylitis, and talks about my first cancer journey, months in hospice, and the incredible doctor who tried a very risky surgery that ultimately saved my life. It's about learning to adapt to, and even embrace, our many limitations.

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01/25/2026 05:38 am GMT
I Pooped My Pants: Removing the Stigma of IBD One Pair of Trashed Underwear at a Time

$14.99

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01/25/2026 05:40 am GMT
Huggies Simply Clean Fragrance-Free Baby Wipes, Unscented Diaper Wipes, 11 Flip-Top Packs (704 Wipes Total)

$18.49

These soft, unscented wipes are so much easier on your bum than toilet paper, especially if you are dealing with anal pain or hemorrhoids. (Don't forget, these are not flushable. Put them in a covered trash can and not in the toilet!)

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01/25/2026 05:52 am GMT
mDesign Slim Metal Rectangle 1.3 Gallon/5 Liter Trash Can with Step Pedal, Easy-Close Lid, Removable Liner - Narrow Wastebasket Garbage Container Bin for Bathroom, Bedroom, Kitchen - Matte Cream/Beige

$34.99

This self-opening and closing bathroom trash can opens by motion, and closes tightly afterwards. It is a small size, and it keeps unsightly trash (such as wipes, used gloves, used incontinence pads, etc.) out of sight. I got one of these for each bathroom specifically to make sure my dog didn't get into the trash and causes a mess.

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01/25/2026 05:40 am GMT
Envlon Tummy Control High Waisted Cotton Underwear for Women No Muffin Top Maternity Underwear Ladies Panties Briefs Underpants Size Large Multicolored

$14.99

If you are recovering from abdominal surgery, these women's panties can provide the support you need during the healing process. They are supportive, comfortable, and the fabric breathes well. The higher waist helps prevent having underwear elastic directly pressing on the radical hysterectomy incisions. These certainly are more comfortable than the abdominal binder you may be given at the hospital (and they happy to be pretty, as well.)

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12/10/2025 07:01 am GMT
IBDassist - IBD Vitamins - Supports with malabsorption and GI Tract Inflammation - Crohn's and Colitis - Inflammatory Bowel

$46.95

When you have IBD it can be really hard to absorb certain vitamins. IBDassist has the vitamins we need in the dosages we need to help keep us healthy. It is so much easier to take one capsule than dozens of individual ones. (As with any vitamin or supplement, you should discuss its use with your doctor.)

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01/25/2026 05:46 am GMT
Colon Cancer and Crohn's Disease Awareness Shirts

$17.99

Rollin' With My Crohnies! I just happen to love this t-shirt. It is available in Men's, Women's, and Youth sizes. They also have many color choices. Sometimes, you just have to have a sense of humor about things. You could laugh or you could cry -- I'd rather laugh!

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12/09/2025 10:04 pm GMT
Everyday Medical Umbilical Hernia Belt - For Men and Women Abdominal Hernia Binder for Belly Button Navel Hernia Support, Helps Relieve Pain - for Incisional, Epigastric, Ventral, & Inguinal H...

$25.75

If you end up with a hernia because of Crohn's or IBD, or if you've had one surgically repaired but still want to have some extra support, I think you'll like this hernia belt. It gives great support and allows you to be more active without making things worse. You can just use the belt portion to provide support after an open radical hysterectomy, as well.

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01/25/2026 05:38 am GMT
HELIMIX 2.0 Vortex Blender Shaker Bottle Holds upto 28oz | No Blending Ball or Whisk | USA Made | Portable Pre Workout Whey Protein Drink Shaker Cup | Mixes Cocktails Smoothies Shakes | Top Rack Safe

$17.95

If you have bile acid malabsorption and have to take a bile acid sequestrant, such as Cholestrymine, Colesavalam, or Colestopol, then you know how hard it is to mix the bile acid powder with juice or another liquid. It clumps. It floats. It is thick and grainy, and hard to drink. But if you have a Helimix Vortex, you simply pour the powder and the liquid in, shake it up and down 20 times, and it will be thoroughly mixed. I've never found anything that works this well. I highly recommend the Helimix Vortex.

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12/09/2025 07:11 pm GMT
Calmoseptine Ointment Tube 4 Ounce (Pack of 2)

$19.00

Calmoseptine Ointment temporarily relieves discomfort and itching around the anus. It provides a multiple purpose moisture barrier. It has a numbing agent to reduce the pain from hemorrhoids, or the itchiness caused by excessive diarrhea. This is my "go to" product for anal itch, burning, and pain.

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01/25/2026 05:49 am GMT
Crohn's and Colitis For Dummies

$19.99

Great for learning the basics about Crohn's and colitis.

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12/09/2025 02:06 pm GMT
Desitin Maximum Strength Baby Diaper Rash Cream with 40% Zinc Oxide for Treatment, Relief & Prevention, Hypoallergenic, Phthalate- & Paraben-Free Paste, 4.8 oz

~~$9.47~~ $7.97

Desitin with the purple label can be so helpful with the irritation and skin breakage that can happen during and after radiation. It contains zinc-oxide (so you have to wash it completely off prior to any radiation treatments) but it can help skin in the anal areas to stay dry so it can heal. (Itis always best to wear exam gloves to apply this because it can be hard to rinse off bare hands._

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01/25/2026 05:53 am GMT
My Pool Pal Adult Swim Diapers - Reusable Diaper for Swimming - (S-Waist: 26-36"; Leg: 17-23", Black)

$31.95

Do you love to swim but fear having a fecal accident while in the pool? These adult swim reusable pants can be worn under your swimsuit, or in many cases, instead of swimsuit bottoms. They fit snuggly around the waist and legs to prevent leaking. While they aren't the most attractive thing in the world, they can give you the chance to return to swimming without fear of fecal accidents.

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01/25/2026 05:38 am GMT
LUXE Bidet NEO 120 - Self-Cleaning Nozzle, Fresh Water Non-Electric Bidet Attachment for Toilet Seat, Adjustable Water Pressure, Rear Wash (White)

$39.99

With Crohn's or IBD, while recovering from hip replacement surgeries, and during medical treatment for cancer, a bidet is an essential piece of equipment. Easy to add to your toilet, and easy to use, a bidet cleans your bottom with a stream of water and helps reduce toilet paper irritation. It also reduces the need for a twisting motion (to wipe.)

If you've never used a bidet, you don't know what you are missing. Thisis a basic model that uses room temperature water, but they also come in deluxe models that use heated water, and ones that have two streams -- one for your bottom and one for women during their menstrual cycle. Once you have a bidet, you'll never understand how you did without one!

(This bidgt is easy to install. I didn't need a plumber, my retired neighbor came over and installed it in less than 30 minutes.)

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01/25/2026 05:41 am GMT
Couch Cup Holder Pillow, Couch Drinks Remotes Holder for Center of Couch, for Sofa, Bed, RV, Car (Brown)

~~$29.99~~ $23.99

This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.

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01/25/2026 05:47 am GMT
Drive Medical RTL11158KDR Folding Steel Bedside Commode Chair, Portable Toilet, 350 Pound Weight Capacity with 7.5 Qt. Bucket, Grey

$42.98

This bedside commode is inexpensive yet sturdy, and able to accommodate a person up to 350 lbs. During recovery, using a bedside commode is so much safer than taking risky walks in the dark to the bathroom.

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01/25/2026 05:48 am GMT
OUMEE 60 PCS Commode Liners with 60 Absorbent Pads, Bedside Commode Liners for Commode Bucket, Disposable Commode Liners for Adults, Portable & Leak-Proof Potty Chair Liners(60Bags+60Pads)

~~$24.99~~ $21.99

These pads and liners make keeping a bedside commode so much easier. They also reduce smells that accumulate overnight or in-between being emptied.

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01/25/2026 05:51 am GMT
Liquid I.V.® Hydration Multiplier - Golden Cherry | Electrolyte Powder Drink Mix | 1 Pack (16 Servings)

$23.46

This has to be my favorite flavor and type of hydration powder. Just add to water!

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12/09/2025 10:04 pm GMT

Making the Best of What You’ve Got!

Heredity is a strange thing. It can give your child shimmering blue eyes, dark, long lashes, or a large, Roman nose. You can end up with a slender build, a large bust, a short stature, dimples, or male-pattern baldness.

Heredity can lead to some wonderful happenstances – like cousins who look like twins, or coppery red hair generation after generation. Heredity can also lead to some unpleasant issues, like rheumatoid arthritis, kidney disease, or congenital deafness.

It almost seems cruel that within a family tree, some have tendencies toward being healthy and robust, while others find themselves on the losing side of the genetic crapshoot we call life. Even among siblings and cousins, the genetic roulette wheel treats some to great fortune while leaving other family members in a completely different situation.

While I am one of those people who finds themselves with a variety of conditions that tend to be caused by the negative part of genetics, there are several traits I quite knowingly obtained from certain family members and ancestors, and those are fortitude, perseverance, stick-with-it-ness, sheer determination, and adaptability.

It is also true that there are other things I quite knowingly gleaned from my family tree. Some I have directly inherited, while others are believed to have a strong genetic component.

Congenital hip dysplasia (Developmental hip dysplasia)
Psoriatic arthritis
Ankylosing Spondylitis
Degenerative Disk Disease
Crohn’s Disease
Inflammatory Bowel Disease
Chronic Kidney Disease
Scoliosis
Spinal Stenosis
Sjogren’s Disease
Myotonic Dystrophy, Type 2

We have no control over having an inherited condition. It is as randomly assigned as eye color or foot size. However, what you make of these conditions is within your purview. No one denies that having chronic conditions which cause you pain and disability can be overwhelming. Personally, I think that finding those small moments of joy, that beautiful sunset, that walk with a friend, or a new bloom in your garden, are the small victories that make life worth living. It doesn’t reduce or relieve the pain, it doesn’t improve your mobility, cure your anxiety, or fix your medical issues, but for that brief moment in time, joy can be the best medicine there is.

Life does not mete out pain, illness, or disability fairly. Sometimes — most of the time, actually — we just have to make the best of what life has given us and find joy where we can.

Products That Make Life Easier with Hip Dysplasia or Hip Replacements

Hip dysplasia, and the inevitable total hip replacements that go along with hip dysplasia, cause some very unique issues, especially with self-care and comfort. Here are some items I personally recommended that can help make your life so much easier.

By means of full disclosure, I may earn a small commission from Amazon for links to any products or services from this website. I also want to add that, as a person with bilateral hip dysplasia, and having bilateral hip replacements for 25+ years, I have purchased and/or used each of the products I am recommending.

KMINA - Long Handled Foot Brush and Toe Cleaner for Disabled, Foot Brush for Shower Between Toes, Long Handle Toe Brush for Seniors, Long Reach Foot Scrubber (Includes Spare Parts)

$29.99

If you have trouble reading down and getting between your toes, this handled foot and toe cleaner is tops! The soft yellow sponge easily pushes between each toe to keep them squeaky clean.

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01/25/2026 05:54 am GMT
Universal Leg Shaving Extension Handle with Adjustable Length Leg Hair Removal Body Shaver Groomer Pregnancy Razor Extension Limited Mobility Tool Use with Various Disposable Razor...

Never struggle to shave your legs again! These were developed for women when they are pregnant (and some are even advertised for me to use to shave their backs) but the long-handled razor is perfect for people with hip dysplasia or who have hip replacements. No more struggling, straining, and twisting like a pretzel to get smooth, silky legs.

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bearback Lotion Applicator for Back & Body. Premium Long Handle Folding Applicator - Sunscreen|Self-Tanner|Body Lotion|Medication. 2 Rollers Included. US Small Business (Teal)

~~$31.99~~ $24.31

This is the best lotion applicator I have ever had (and I've bought many of them over the years, only to find they are unwieldy or hard to store.) You put the lotion on the roller, and you can use it on your back, your backside, your legs (front and back) and even your hard-to-reach feet. It also works well with creams. It even comes with two washable replacement rollers. I've had mine for years, and I've never even had to replace the roller cover once.

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12/10/2025 07:01 am GMT
Homymusy Sock Aid,Soft Sock Aid Device for Elderly, Disabled,Pregnancy Hip (Dark Blue)

~~$9.99~~ $8.99

This is my favorite sock aid (I call it my sockerator!) It has white terry cloth on the outside, and smooth blue vinyl-type fabric on the inside, so the sock stays on the terry cloth, and your foot slips in easily on the vinyl side. I especially like that it is lightweight, you can curl it up to fit it in a suitcase or bookbag, and it has loops on the end of the strap for those of use who don't have a good grip. I will tell you though, if you use it daily like I do, you do have to replace it every few years, but it is totally worth it!

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01/25/2026 05:42 am GMT
Tea Tree Oil Foot Soak with Epsom Salt - For Toenail Repair, Athletes Foot, Softens Calluses, Soothes Sore & Tired Feet, Nail Discoloration, odor Scent, Spa Pedicure Care - Made in USA 16 oz

~~$17.27~~ $13.39

Tea tree oil foot soak feels wonderful, and if you have toenail psoriasis, it can really make your toes feel better. The foot soak smooths and softens your feet without having to bend over very much.

Dry, itchy or callused feet? Use this tea tree soak either in a foot soaker or just use a basin or dishpan. This tea tree oil foot soak is incredible and just what you need for softer, more comfortable feet.

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01/25/2026 05:49 am GMT
KINCMAX Shower Caddy with 4 Hooks, 304 Stainless Steel, 1 Shelf, Adhesive Mount, Easy to Install, Fast Drain, Holds 20lbs, Ideal for Bathroom, Kitchen, Entryway

$18.99

Don't store your body wash, conditioner, and other shower items on the floor or on your shower chair, because that makes it difficult to safely access them. I have never seen a shelf product like this that actually sticks to the tile walls and stays there! I have been using mine for over 3 years now, and it has never lost its grip. (I will add that I don't use the attachable hooks because they fall out too easily.) The caddy itself is so helpful! (If you move and have to remove it, you can buy new adhesive tabs for it on Amazon as well.)

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12/10/2025 01:04 am GMT
Manmihealth Silicone Back Scrubber for Shower(Thick Bristles), Body Scrubber with 15'' Long Handle, Light & Easy-to-Hold Shower Brush for Skin Exfoliating and Massaging, Not Good in Lath...

$7.99

This is a bath or shower scrubby for your back or lower legs. The bristles are soft and feel lovely on your skin. Because it is silicon, you don't have to worry about bacterial growth as you do with loofahs, net scrubbers, and natural bristle brushes. Just rinse it when you are done and shake out the excess water. Next time you use it, it will be squeaky clean.

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12/09/2025 10:04 pm GMT
5 STARS UNITED Knee Pillow for Side Sleepers - Memory Foam Leg Pillow for Side Sleeping - Between Legs Pillow for Hip and Lower Back Pain - Sciatica Pain Relief

$34.95

If you are going to sleep on your side with hip dysplasia, or even more importantly, after a hip replacement, you need a knee pillow to keep your hips safe as you side sleep. I have had a least six different kinds of these over the years, and this one is the best by far. The memory foam holds its shape while staying comfortable. I recommend you get it in the gray color -- because the white color always turns ivory with age, and looks icky, even when it isn't. A knee pillow for people with hip dysplasia or replacements is essential.

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01/25/2026 05:54 am GMT
Kӧlbs Bed Wedge Pillow with Memory Foam Top | Chic Jacquard Cover | Wedge Pillow for Sleeping and Acid Reflux, Heartburn, GERD

$43.99

A wedge can help you get more comfortable in bed while recovering from a variety of surgeries. It can also help with GI issues such as GERD. This memory foam wedge is extremely comfortable.

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01/25/2026 05:38 am GMT
Desktop Power Strip with 3 Outlet 4 USB Ports 4.5A, Flat Plug and 5 ft Long Braided Extension Cords for Cruise Ship Travel Home Office, ETL Listed

$14.99

This extension plug contains a place for 3-prong outlets as well as four charger outlets. It is helpful to keep plugs on top of the desk to reduce bending to reach, and I found it was fabulous while staying in the hospital (where there never seems to be a plug or outlet nearby that isn't already in use.) The metal coil makes it sturdy and safe, and oh so easy to wipe off with disinfectant when you leave.

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01/25/2026 05:50 am GMT
Embracing Life's Limitations: Letting Go of Who You Were Supposed to Be

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(The Kindle Version is $0.00 if you have Kindle Unlimited, or $3.95 if you don't.) Here's a link to my first book, Embracing Life's Limitations: Letting Go of Who You Were Supposed to Be. It is a story of growing up with bilateral hip dysplasia, living with psoriatic arthritis and ankylosing spondylitis, and talks about my first cancer journey, months in hospice, and the incredible doctor who tried a very risky surgery that ultimately saved my life. It's about learning to adapt to, and even embrace, our many limitations.

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01/25/2026 05:38 am GMT
Biofreeze Professional Strength Pain Relief Roll-On, Knee & Lower Back Pain Relief, Sore Muscle Relief, Neck Pain Relief, Shoulder Pain Relief, 3 Pack (3 FL OZ Biofreeze Menthol Roll-On)

~~$38.99~~ $36.99

Bio freeze in a roll-on bottle is great for when your calves are stiff, when you get Charlie horses, or when you wake up with restless legs. You simply roll it on your skin, and it helps your joints and muscles relax and feel better.

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01/25/2026 05:41 am GMT
Cushion Lab Patented Pressure Relief Seat Cushion for Long Sitting Hours on Office/Home Chair, Car, Wheelchair - Extra-Dense Memory Foam for Hip, Tailbone, Coccyx, Sciatica - Light Grey

~~$85.00~~ $74.99

There are dozens of kinds of seat cushions on Amazon that say they help keep you comfortable when you have a job that requires sitting most of the day (or if you are just always at the computer, like me.) I've tried 5 different kinds of cushions and 4 of them fell short. The Cushon Lab seat cushion is the only one that allows me to sit for long periods of time without becoming stiff or painful. I realize they are a bit expensive, but which would you prefer -- spending your money on a cushion that doesn't really help and then not using it, or buying the best and finding great relief? (I have two of these in my home.)

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01/25/2026 05:53 am GMT
Cushion Lab Extra Dense Lumbar Pillow - Patented Ergonomic Multi-Region Firm Back Support for Lower Back Pain Relief - Lumbar Support Cushion w/Strap for Office Chair, Car, Sofa, Plane - Grey

~~$75.00~~ $66.99

If you are getting the Cushion Lab seat cushion, you may want to also get the Cushion Lab back cushion. (I have two of these at home.) They provide incredible back support, and when paired with the Cushion Lab seat cushion, they can make any desk chair into the most incredibly comfortable desk chair. It has a strap that goes around the chair to hold it in place. They have a variety of colors. The Cushion Lab seat cushion, back support combo provides supreme comfort.

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01/25/2026 05:53 am GMT
Vive Long Handled Shoe Horn (23 Inch) - Plastic Shoehorn for Men, Women and Kids - Adjustable Extended Reach Assist - Large Dressing Aid, Sock Remover for Seniors, Elderly, Disabled - Longhandled Tool

$11.99

I know what you are going to say, "I need a heavy-duty metal long-handled shoehorn." I beg to differ. Metal long-handled shoehorns are slippery, easy to drop, and hard to hold on to. They are also heavy in your hand and not the least bit flexible. What you really need is a lighter weight, plastic shoehorn, and this one folds so you can take it with you on vacation, or to store it away in your dresser.

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01/25/2026 05:49 am GMT
RMS 26 Inches Folding Grabber Reacher with Ergonomic Handle

~~$19.99~~ $15.99

Of course, while a grabber (or reacher) is always essential for members of the hip dysplasia club, this particular one folds in half so you can fit it in a suitcase, bookbag, briefcase, or very large purse. I find it is fabulous to have this for traveling, going to doctors' appointments or an imaging appointment where you have to change into a gown, or just to keep in your car or office. You never know when you'll need it.

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12/09/2025 07:11 pm GMT
LUXE Bidet NEO 120 - Self-Cleaning Nozzle, Fresh Water Non-Electric Bidet Attachment for Toilet Seat, Adjustable Water Pressure, Rear Wash (White)

$39.99

With Crohn's or IBD, while recovering from hip replacement surgeries, and during medical treatment for cancer, a bidet is an essential piece of equipment. Easy to add to your toilet, and easy to use, a bidet cleans your bottom with a stream of water and helps reduce toilet paper irritation. It also reduces the need for a twisting motion (to wipe.)

If you've never used a bidet, you don't know what you are missing. Thisis a basic model that uses room temperature water, but they also come in deluxe models that use heated water, and ones that have two streams -- one for your bottom and one for women during their menstrual cycle. Once you have a bidet, you'll never understand how you did without one!

(This bidgt is easy to install. I didn't need a plumber, my retired neighbor came over and installed it in less than 30 minutes.)

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01/25/2026 05:41 am GMT
"Sex ...with these hips?!": A guide to dating, sex and relationships, whilst living with hip dysplasia, hip arthritis, following preservation surgeries and post hip replacement.

$12.88

With hip dysplasia or after hip replacements, being intimate with your partner can seem like a daunting task. As osteoarthritis sets in as we age, it can become even more difficult to find comfortable ways to enjoy intimacy. This straightforward book can help you find ways to enjoy intimacy again even with painful or replaced hips. Let's face it -- hip dysplasia is notorious for limiting our abduction, adduction, pelvic strength, and flexibility. This book has the answers to questions you never dared to ask.

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01/25/2026 05:37 am GMT
FEYHAY Copper Compression Socks (3 Pairs) 15-20 mmHg Circulation is Best Athletic & Daily for Men & Women, Running, Climbing (Small-Medium, 03 Beige)

$9.99

These wonderful copper compression socks are great for keeping blood circulating in your legs and prevent leg cramps. These compression socks come in a variety of colors.

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01/25/2026 05:55 am GMT
ELENKER Upright Walker, Stand Up Folding Rollator Walker Back Erect Rolling Mobility Walking Aid with Seat, Padded Armrests for Seniors and Adults, White

~~$209.99~~ $179.99

This upright rollator is wonderful for helping with mobility and balance, while keeping you in an upright position. Regular walkers and rollators lead to the user becoming hunched-over, but an upright rollator keeps your back nice and straight, and keeps you with good posture. I've had mine since 2020 and it is still working great!

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01/25/2026 05:40 am GMT
Couch Cup Holder Pillow, Couch Drinks Remotes Holder for Center of Couch, for Sofa, Bed, RV, Car (Brown)

~~$29.99~~ $23.99

This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.

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01/25/2026 05:47 am GMT
Longering 4PCS Orthopedic Bed Wedge Pillow Set for Sleeping - Wedge Pillows for After Surgery for Body Neck Back and Leg Pain Relief - Triangle Pillow Wedge for Sleeping & Acid Reflux & GERD &...

This variety of bed wedges can help you stay comfortable while resting, reading in bed, sitting up to watch TV or use a laptop, to raise your legs higher, when needed, etc. These can be used on a regular bed, on your sofa, or many other types of furniture. The quality memory foam can reduce body pain, improve blood circulation, help with low blood pressure, and relieve acid reflux. The removable zipper covers are easy to remove and launder.

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Best Choice Products PU Leather Electric Power Lift Chair, Recliner Massage Chair, Adjustable Furniture for Back, Legs w/ 3 Positions, USB Port, Heat, Cupholders, Easy-to-Reach Side Button - Brown

~~$499.99~~ $389.99

This recliner has electric lift, heat, massage, and cup holders. Comfort and convenience, all in one chair!

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01/25/2026 05:40 am GMT
8 Pack Cord Organizer Holder,Costop Strong Adhesive Desk Cable Management Magnetic Easy Open,Organize Phone Charging Cords Wire Holder Organizer Neatly for Home,Office,Car,Desk,Nightstand

~~$12.99~~ $8.99

Are you tired of your charger cords (or any cord, for that matter) sliding down to the floor where you can reach it? These easy to apply and use cord holders prevent that from happening. While these come in black, they also have them available in white.

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01/25/2026 05:41 am GMT
Electrical Outlet Extender Stick - Features USB-A, USB-C and 2 AC Outlets, Extends 22"-34", Rotates 180 Access Hard-to-Reach Outlets, Wall Plug Power Socket Expander Nightstands, Sofa, Desks...

$49.99

Is your outlet too low for you to reach, or is it behind your bed? This outlet extender brings the outlet up to a height you can reach without having to bend or have to pull furniture away from the wall. It also swivels, so you can use it to move an outlet to the right or left of a piece of furniture, and it has charger outlets as well.

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01/25/2026 05:39 am GMT

Fake It ’til You Make It

I realized a few days ago that I’ve become depressed since my gallbladder surgery. (I’ve fought depression my entire life, though not many outside my immediate friend group would know that.) When I’m depressed, I just quietly sit and stare, and my life and heart feel very “blank.”

I had my emergency surgery, everything went well, I came home, and I’ve been recovering well, so I have no reason to be depressed, but sometimes, when I’m alone for any length of time, and recovering keeps me tired and uninspired, I find myself drawn into a very blank, empty state of mind that I have a hard time putting into words.

I’ve tried to push through this for the past three days now, but instead, I’ve just been sitting here, staring aimlessly, and wondering why I feel this way. Sometimes, the best way to push through it is to “fake it ’til you make it.”

So finally, around 3pm today, I said to myself, “Enough!” I took a long, hot shower, washed and dried my hair, put on clean clothes (instead of staying in my nightgown all day) and went for a fairly long walk with my upright rollator. It’s 77 degrees, sunny, and bright here today, and I let the sun and its warmth surround me.

I felt the sun surround me, and before I knew it, I was smiling and feeling good. Never underestimate “faking it until you make it.” Sometimes, your soul is begging to be happy, but you just can’t find the way to start. That fake smile turns into pure joy before you even realize it.

Where the Horizon Lies

I have lived in the Gulf Coast of Florida for 3 ½ years now, and yet, I have not seen a single beach here. I spent 28 years living in Virginia, a stone’s throw from Virginia Beach and Ocean View. Seven years prior to that, I lived near Buckroe Beach and Grandview. I started thinking about it today. The last time I recall walking on a beach was in 2005, when I met my parents at Myrtle Beach, SC for a week’s vacation.

You see, I can’t walk across soft sand without assistance, and I’ve had that problem since I was in my early thirties. Back in 2005, my dad was at Myrtle Beach with me, and he knew just how to help me traverse the powdery sand. I could walk by myself on the hard, wet sand at the water’s edge, and feel the water and grainy mixture of sand, shells, and water engulf my toes.

My parents went for a walk down the beach, while I stood on the firm, wet sand, watching the sunrise and the gentle waves bank, ebb, and flow. At one point, they turned toward me from down the beach, and my dad waved at me. I snapped a picture, and in my head, I thought to myself, it’s as if they are leaving me and saying goodbye for the last time. To this day, I have that photo, and it brings tears to my eyes because they are both gone now. I still imagine them walking away forever, and when no one is watching, I wave back at them.

And so, it has been 18 years since I have walked on a beach – any beach. I long to go and spend just a short while, splashing my feet at the edge of the waves.

I’m very good at thinking of ways to do things. I know they have beach wheelchairs, but that is not as simple a solution as you may think.

First of all, you have to have someone to push that chair. Second, you have to be able to find a parking place close enough to pick up that chair. Last of all, you have to be able to get the chair back to where you got it, and get back to the car. None of these are easy things in Florida, where the parking lots are always full of tourists, most everyone has a handicapped placard, and where I’ve become quite intolerant of direct sun.

They even have motorized sand wheelchairs over on Anna Marie Island. However, they only rent those by the week or the day (not by the hour) so it would cost almost $200 for that pleasure, and it still has all the parking and returning issues. They assume you are renting a beach house, so those are the only places they deliver to and pick-up from. Beach houses are, of course, only rented by the week or month.

Even without a sand wheelchair, if I had someone able to help me walk on the sand, I could probably still do it. But that would also mean bringing a folding chair (a very specific one that is high enough for me, because I can’t sit on the ground or the sand and get up safely.) Once I got there, I wouldn’t have the strength or the tolerance for the sun to stay too long. And I don’t, stupidly, think the world revolves around me. It would be quite an expedition to make this happen, with anyone who helped me finding little or no pleasure in the journey. So instead, I look at the two photos I took the very last time – back in 2005 – one of the foamy water rushing forward, and the other of my parents turning and waving goodbye as they walked away.

I spent so much of my life struggling to live independently and to rely only upon myself, while simultaneously distancing myself from things I loved because they forced me to be dependent. With each thing you can no longer do, your world becomes smaller and smaller. While walking on a beach, or swimming in the ocean, lake, or gulf, are distant memories to me now, they are so close that they call my name even when I squeeze my eyes tightly closed, and try to think of mountains, or boats, or bicycles whizzing down a steep hill. Somehow, it all becomes the sun rising, or setting, across a darkened sea. And suddenly, I am washed-away, to where the horizon lies.

Embracing Life’s Limitations

As children, we are told we can achieve any goal if we just try hard enough and don’t give up. Television commercials tell us this. Motivational speakers tell us this. Often, our own parents tell us this. The harsh reality is that, sometimes, we choose goals and paths that are beyond our physical, emotional, financial, or intellectual abilities. We all have limitations, whether or not we choose to acknowledge them.

The reality is there are many goals we can choose from, many ambitions we can follow, many careers to choose from, so the thought that each of us has only one path to follow is erroneous. There are thousands of things in our universe that can make us feel valuable, worthy, needed, and successful.

By learning to adapt to life’s inevitable upheavals, we can start to embrace life’s limitations, make life choices that will fulfill our reasonable dreams and expectations, and stop worrying about who other people think we should be. Resilience, flexibility, and adaptability are the traits that lead us to a happy and fulfilling life.

In November 2022, I fulfilled my lifelong ambition of writing a book. I have been piecing together the parts of my story for the past two years through my online blog http://www.janmariet.com along with at least 100 pages of new material. I hope you will enjoy reading part of my life remembrances and responses in “Embracing Life’s Limitations: Letting Go of Who You Were Supposed to Be.”

While my book is still very new to the market, it already has 5-star reviews on both Amazon and Goodreads.com. I’d like to share a couple of the reviews with you.

I hope you decide to share my life story. There’s so much more to tell!

My New Book Just Released!

I have exciting news! My book, “Embracing Life’s Limitations: Letting Go of Who You Were Supposed to Be” is available on Amazon.

You can follow this link to find it. https://www.amazon.com/Embracing-Lifes-Limitations-Letting-Supposed-ebook/dp/B0BL94PHJH/?_encoding=UTF8&pd_rd_w=CxvDY&content-id=amzn1.sym.f05f10a7-d30f-4cc9-9521-a1dfe37686ab&pf_rd_p=f05f10a7-d30f-4cc9-9521-a1dfe37686ab&pf_rd_r=JAYN9H244QZ1E8ANGSX9&pd_rd_wg=f9bPx&pd_rd_r=48106e0e-ef73-4d69-9675-08ae089a9c21&ref_=pd_gw_ci_mcx_mi

I hope you’ll take a look. Best wishes!

Lies My Parents Told Me

When I was growing up, my parents taught me that I could do anything, be anything, if only I wanted it bad enough, worked hard, and never gave up. These are the lies my parents told me.

It was a hard reality when I was a young adult, and faced the truth – that what I had been taught as a child wasn’t true at all. It took me a long time to realize that it wasn’t my lack of trying, or working, of believing – it was having unrealistic expectations of life that were my greatest downfall, and my ultimate victory.

I had a great “work ethic” – I didn’t mind working 80 hours a week (at no additional pay) or earning advanced graduate degrees and certifications while working full time and having a second job. I had a professor in college who had a sign in his office. It said, “Hard work makes happy people.” I remember reading it, and saying to myself, “I’m going to be very happy, then.”

I had many jobs I liked, and many jobs I loved. I watched and struggled as each one became beyond my physical means. I was born with a disability, although we never called it that when I was a child. I had “a hip problem, and the doctors had fixed it when I was a little girl.” That was another lie my parents told me.

I was in college before I even knew that my “condition” had a name – severe bilateral congenital hip dysplasia, with complete unilateral dislocation. I was in college when I learned that I could never have children. I had just finished college when I learned that my childhood repairs would not last much longer. My mother, who I loved very much, could not bring herself to tell me these things, although she had been told these things when I was still quite young. I learned them after I was 18 and went to my first orthopedic appointment by myself. The surgeon who blurted out the part about not having children assumed I had been told long ago, but I hadn’t ever been told. He started talking about the bone spurs I had been developing, the need to go in and surgical remove some of them that were causing me pain, and how I needed to start on steroid therapy immediately so I could tolerate the pain until I was a bit older, since hip replacements (at that time) only had a life expectancy of about 10 years. To say I was stunned by this news is quite an understatement.

The doctors had “fixed me” through a series of 12 childhood surgeries, that broke my pelvis and restructured it, broke my femurs and adjust the angles, cut notches into my restructured pelvis so I had some semblance of hip sockets, and reshaped my acetabulums and misshaped femoral heads. My first surgery was when I was 18 months old. From that time, until I was 4 and half, I had to wear body casts after each surgery and retrieval procedure. When I wasn’t in a body cast, I had to wear a position brace. I could not walk or use the bathroom in either of these devices. Can you imagine being a toddler trapped in body cast after body cast? But those 12 surgeries gave me the ability to walk. It was a miracle. In my mind, I was “fixed.” If only that had turned out to be true.

What I never knew was that this “fix” would not last my whole life, and that in my early 20s, the wear-and-tear of walking as a child and teen would wear-away every part of my childhood “repairs.” I had no idea how many more surgeries were in my future, or how long each recovery would be.

Being in your mid-twenties and needing bilateral hip replacements was not an easy place to be. I had my first replacement in my late twenties, which simply wasn’t done back then. My second total hip replacement was in my thirties, after suffering an AVN which cut off the blood supply to my left hip and pelvis, causing the bone there to die and crumble away. It required bone harvesting from another part of my body, multiple bone grafts, a modular hip replacement, and months of recovery time and physical therapy. The incision for that surgery was 16 inches long!

I worked so hard throughout my life, but my lifestyle never reflected that hard work. I always had inexpensive compact cars, and I kept my cars for 15 years or so, until the engines finally just gave way. I had to give up the jobs, and careers, I loved so much, because I simply became physically unable to do them anymore. As my body declined, I simply couldn’t do the work anymore, and each time this happened, it felt like a defeat – like a failure on my part. I have to tell you, this crushed me.

But each time, I found a way to get through it, a way to survive it, and found something else I could do with my decreased physical abilities, and most importantly, I found a way to love my new job or circumstance. I had so much joy, despite my circumstances.

My medical expenses over my adult years almost bankrupted me several times, and left me without savings for fun things, like vacations, going to the theater, to concerts, to sporting events, out with my friends, or virtually to anything fun. I never had enough money to pay for my adult surgeries, x-rays, injections, physical and occupational therapy, my medications, my ongoing doctors’ appointments, etc. Before the ACA (the Affordable Care Act,) every time I changed jobs, my disability was considered a “pre-existing condition” and wasn’t covered by health insurance for the first year. My second hip replacement happened while in one of these “pre-existing condition” periods, which meant I had to pay everything myself.

That hip replacement (which included multiple bone grafts and bone harvesting) left me no choice but to sell my home to pay for my surgery and rehab expenses. This meant, when I finished recovering, I would be homeless, unemployed, and once again, without insurance.

Thank goodness a family member stepped in and purchased my house from me, and then let me live there rent-free for a year while I retrained for a new, less physically demanding career. Once I started working full-time again, I paid back every penny for that “free rent” and I made the mortgage payments on the house until I had bought it back completely. It took me 11 years to recover from that surgery financially, but I paid every penny I owed.

I have always taken great pride in the fact that I have never left a debt unpaid. By doing this, though, I lived paycheck-to-paycheck, and did without so many things. I always repeated my grandmother’s words “if you don’t have cash for it, you don’t really need it.” so many times, as I walked away from something I really wanted, but couldn’t afford. Her depression-era advice helped me to avoid debt, other than medical debt.

My money always had to go for some medical issue that wasn’t covered by insurance, or for co-pays, or for out-of-pocket, or for self-paying my own insurance premiums. It went for physical therapy, and leg braces, and rollators, and walkers, and crutches, and $8,000 annual out-of-pocket I had to pay before my health insurance even kicked in each year.

In my twenties, I worked as a therapeutic recreation instructor and martial arts teacher (I’m a 3rd degree black belt in Aikido.) I also taught women’s weightlifting, self-defense, and wheelchair weightlifting. When I was 24, that came to a crashing halt as my physical condition deteriorated, and I was unable to do these things anymore.

I got my master’s degree in education and recreation, and became a recreation specialist at a rec center. I moved up quickly to a recreation supervisor, and then a recreation superintendent. But then my right hip failed. I was out for 16 weeks having it repaired and recovering. (I had enough leave time accumulated to cover the entire 16 week absence, and even found someone who was willing to do my job while I was gone.)

About a month after I came back to work full time, my boss called me into his office and said “You no longer have the physical stamina to do this job. You can’t walk long distances, you struggle with stairs to the stage at festivals, and you can’t do multiday festival work anymore. It is your choice, you can either quit today, or we will fire you tomorrow.” (This was before ADA or FMLA, so there was nothing I could do about it.)

Sadly, this ended my twelve-year career in recreation. Physically and financially, things got much worse before they got better. After my second hip replacement surgery (which required bone harvesting and multiple bone grafts) I decided to go back to school and become an elementary teacher. It only took me two semesters to complete these classes, and then one more semester to student teach.

I worked as a teacher for 20 years, but my physical condition continued to decline, until I had to give up teaching as well. I struggled with the physicality of it for years before I had to give it up completely. Again, I blamed myself because my body was failing.

Now, after losing my mobility, battling cancer for a year and a half (surgery, radiation, chemotherapy, and brachytherapy), I also lost one third of my intestines because they were so damaged by radiation they were no longer functional. When you lose this much of your intestines, you will never have regular bathroom habits, and you can never eat normally again. To say the past 3 years have been difficult is an understatement.

I also have to take a medicine twice a day which costs more than my entire monthly early retirement payment. (I cannot survive without this medicine, and there is no assistance program that covers it.) My disability check isn’t even enough for my basic expenses (housing, food, heat and air conditioning, car insurance, internet, taxes, etc.) I also have to pay for house cleaning and yard work that I am not physically able to do. I watch each day as I have to pull money out of the small investments that were supposed to take care of me in my old age, just to pay for basic expenses and medication. Knowing I will not ever be able to work again leaves me very concerned for my future, but I try not to think about it too much, simply because it will overwhelm me if I do.

I’m also on immunotherapy, which costs over $52,000 per year. Fortunately, I was able to find a medical foundation that covers most of this expense, as Medicare doesn’t cover any of it, and without it, I am completely immobile and homebound, and in incredible pain. Immunotherapy has been life-changing for me.

So I have learned in my adult life that what my parents taught me was not true. (I’m sure they believed it was, but that doesn’t change reality.) I worked hard. I gave it my all. I paid my debts, didn’t buy things I couldn’t afford, and didn’t waste money on vacations, movies, concerts, or nights out with friends.

My spirit has been so close to broken many times, but I’ve always bounced back. I’ve always adjusted and found another way to get by. And throughout it all, I’ve found great joy in everyday life.

I don’t want you to think that even in this financial crisis, that I am hopeless. I have had so many miracles in my life, how can I not rejoice in that? I have survived countless surgeries, psoriatic arthritis, ankylosing spondylitis, a battle with cancer, loss of a large part of my intestines/colon, loss of my mobility, and being medically homebound for the past three years.

I have even come to terms with my latest diagnosis, Myotonic Dystrophy type 2 (DM2), which is genetic disorder that causes proximal muscle weakness around the shoulders and pelvis or a “limb-girdle weakness.” This form of adult-onset muscular dystrophy started when I was around 38 years old, but wasn’t actually diagnosed until earlier this year, when my GI surgeon noticed my symptoms, and had genetic testing done. For 20 years, my doctors had said my increasing weakness, stiffness, and declining mobility was caused by my congenital disability. They never even looked for another cause. It turns out, it had nothing to do with hip dysplasia or my autoimmune disease.

The clinical onset of Myotonic Dystrophy type 2 is in a person’s third or fourth decade of life (which is exactly when it happened to me,) and leads to weakness that typically affects proximal muscles around the shoulders and pelvis causing problems with climbing stairs, brushing and drying hair as well as getting out of a chair. I present with all of these symptoms, as well as the genetic marker. It explains why my mother, who also had bilateral congenital hip dysplasia, was so much more able-bodied throughout her life than I was.

I used to think I could be anything I wanted, I could fix any problem, I could achieve any goal, if I just tried hard enough and didn’t give up. Reality is much different. So many times, your spirit is willing, but your body just can’t do it. I struggled with this for most of my adult life – feeling like a failure because I couldn’t achieve it, no matter how much I tried. I’m here today to tell you that it wasn’t because I didn’t try hard enough, didn’t work hard enough, didn’t believe hard enough. I blamed myself for most of my adult life for a failure I had no control over.

To end my story, I’m going to tell you something a wonderful professor (and dear friend) told me when I was in my late twenties. He said “In the universe, there are a million things you can do, and a million things you can’t do. And in your entire life, there is only time to do a thousand or so things. You can spend your life mourning what you can’t do or enjoying what you can do. The choice is entirely up to you.”

Thank you to my friend and mentor, (the late) Dr. Charles Smith, for those amazing words of wisdom, that have gotten me through the past 40 years of challenges and joy. I wonder if he ever knew how life changing his words were. I truly hope he did.

I do try to enjoy what I can do, and not focus on what I can’t do. Sometimes, that is harder than other times, but I’ve gotten pretty good at it over the years. Life is full of joy, if you just know where to look, and to ignore the (well intentioned) lies our parents told us.

What is Hip Dysplasia, and Why Are Some Cases Very Mild, While Others Are Quite Severe?

Congenital hip dysplasia describes a multitude of conditions. Some are very mild and may not even be noticed until adulthood. In other cases, the deformities are so severe that the child is unable to weight-bear without surgical intervention and cannot learn to walk as a toddler. How can one term, hip dysplasia, describe such a huge range of hip deformities? Why are some people only mildly affected by this condition, while others are severely disabled?

First, let’s start with some background knowledge. The hip is a ball-and-socket joint. The “ball” refers to the femoral head. The “socket” refers to the acetabulum which is a part of the pelvis.

In some cases, the femoral head is mis-shapened or at the wrong angle to fit into the socket (the acetabulum.) In some cases, the acetabulum itself is just too shallow to hold the “ball” (femoral head) or it is in completely the wrong location on the pelvis (too high or too low.) Sometimes, both the femoral head and the acetabulum are deformed or otherwise unusable.

Congenital hip dysplasia occurs more often in girls than in boys. (It is eight times more likely to occur in girls.) There is a genetic component to hip dysplasia. Most often, hip dysplasia occurs in one hip. For reasons no one completely understands, it occurs in the left hip more often than in the right hip. When you have dysplasia in only one hip, it is called unilateral hip dysplasia. Sometimes, much less often, it occurs in both hips, and that is called bilateral hip dysplasia.

Congenital simply means it is present from birth. This is misleading, because when babies are born, their hips are not fully finished developing. For this reason, this condition is sometimes called developmental hip dysplasia, because it happens as the hip develops.

Congenital hip dysplasia cannot be detected prior to birth. In the US, each baby is check at the hospital for hip dysplasia at birth, but it often goes undetected because the hips are not fully developed. Babies with family histories of hip dysplasia, as well as those who are breech births, or born to mothers with low amniotic fluids, need to be rechecked as their hips develop. Catching this condition early is key in a positive outcome or recovery.

Sometimes, hip dysplasia can occur later in childhood. This is typically caused by Legg-Perthes disease (also called Legg-Calve-Perthes disease.) This disease cuts off some of the blood supply to the femoral head, causing it to deform and lose its round shape. The blood supply eventually returns, but at that point, the damage is done.

If hip dysplasia is caught early, during the first few months, and if it is mild, a device such as a Pavlik Harness can help in reshaping the joint so it will be more functional as the child grows. A Pavlik Harness can only be used on babies younger than about 8 months. It works best on very young babies. It is worn for 6-12 weeks while the baby’s joints are developing. If this approach fails, if the child is too old when the dysplasia is discovered, or if the dysplasia is too severe, then the next step is often a femoral or acetabular osteotomy (or both.)

An osteotomy is when a surgeon cuts and reshapes bone to make it more functional. The bone may be shortened, lengthened, or the angle can be changed to cause realignment. When it comes to hips, there are two basic types of osteotomies, a femoral osteotomy (FO) and an acetabular osteotomy (AO).

In a femoral osteotomy, the ball portion of the hip socket can be reshaped to make it more round, the femoral neck can be shortened or lengthened to make it fit into the socket better, or the angle of the femoral neck and head can be changed. In an acetabular osteotomy, the socket portion of the hip joint can be made deeper, it can be increased, or a section of the pelvis can be cut out, turned, and pinned into place to make better contact with the femoral head.

For most osteotomy procedures, pins and plates are used. Children are placed in body casts after the surgery to assure they do not weigh-bear or change position during the recovery time. Most of the time, another surgery is performed afterwards to go back in and remove the pins and plates after the bone has healed.

There are many types of osteotomies, depending on the deformity that is present. Sometimes, there are multiple deformities causing the hip to not function properly. In extreme cases, more than one osteotomy per side may be required, leading to multiple surgical procedures.

You may ask, why not just do a hip replacement? You can’t do a hip replacement on a child because their bones are still growing, and replacements do not grow. For this reason, they are not an option for growing children. For many, the growth plates do not seal until around age twenty, and hip replacements are not an option until after the growth plate seal.

In young adults, in their twenties and early thirties, if no osteoarthritis has set in, a hip preserving surgery called a periacetabular osteotomy (PAO) is often recommended. Recovery time is longer than for a hip replacement, but the results are often remarkable. This type of procedure is called hip preservation, and preserving the natural bone is almost always preferable to replacing it with implants. People who get a PAO often have to have total hip replacements later in life.

You may ask why not simply give a total hip replacement (THR) as soon as the person’s growth plates have sealed? The reason is very simple. While hip replacements have advanced so much in the past decades, they still only have a life expectancy of 10-15 years. Then, they wear-out, and have to be fixed. When you fix a hip replacement, it is called a hip revision.

Revisions can be as basic as replacing the liner in the “socket” part, or as complex as removing the “stem” portion (the long spike part that goes into the femur) and replacing it, which often requires bone grafts and a much longer recovery time. Each revision is more difficult and more involved than the original hip replacement, and often, each time a revision is done, the person has less bone to work with, requiring bone grafts, and other metal parts (such as screws and bolts) to hold the prosthesis in place.

The outcome for people with hip dysplasia vary a great deal. Those with mild dysplasia and early intervention tend to do well. They often need to limit some activities, such as contact sports and high-impact activities, but are able to maintain a fairly normal lifestyle. Differences in leg length and hip height often leave a tell-tale limp.

Those with more severe deformities and multiple surgical procedures tend to have much more restricted outcomes. People with more severe deformities and multiple surgical repairs tend to suffer from diminished range-of-motion, weakened muscles, muscle atrophy, and very weak hip flexors and hip extensors (glutes), which greatly restrict their walking and standing ability. In these cases, physical activity is often restricted to walking, swimming, and no-impact exercises.

The last part can be very touchy to talk about. Weight has a huge importance in continued hip health. The plain truth is that the more you weigh, the more wear-and-tear you put on your hips. However, people with restricted motion and who use treatments like steroid therapy (a common treatment for pain and inflammation in hip patients) often lead to serious weight gain. It is very common for an orthopedic surgeon to insist a patient lose weight prior to hip preservation surgery or hip replacement surgery.

The reason for this is that these procedures have a much better chance of working if the patient is not obese. Recovery statistics for those who are morbidly obese are not good. Many surgeons will not even consider hip surgery on a patient with a BMI of greater than 35, with most surgeons preferring a BMI of less than 30. (Different doctors have different preferences.) For those whose BMI is greater, weight loss has to take place first – oftentimes leading to bariatric surgery or the use of rapid weight loss techniques such as medically-monitored liquid diets with extreme caloric-consumption controls.

It is not uncommon for surgeons to tell patients “come back when you’ve lost 50, 75, or 100 pounds.” Hearing that you are “too fat” for hip surgery is a very difficult thing to hear, especially when osteoarthritis and hip pain limit your mobility, reduces your exercise options, and some treatments (such as steroid therapy) can cause weight gain. Many orthopedic surgeons refuse to do surgery on those who are obese or morbidly obese. The prognosis is not as good for people who are obese, and the chance for complications is greatly increased. Co-morbidities of those who are obese, such as diabetes, high cholesterol, high blood pressure, and heart disease add to the risks, as well. Sometimes, bariatric intervention, such as a gastric bypass or gastric sleeve have to be considered.

Early detection and treatment improves the life experiences of people with hip dysplasia. Surgical advances have increased the likelihood of normal mobility, and have decreased pain and range-of-motion limitations. The severity and location of hip deformities, the age when receiving initial treatment, ongoing treatment as the person ages, and medical advances all play a part in the recovery potential for people with hip dysplasia.

I hope you’ll take a moment to leave a comment regarding your life journey with hip dysplasia. This can be a very isolating condition, and simply knowing there are others out there with the same condition can make the journey easier for those of us who are traveling this path.

“Life Unworthy of Living” Response

{This post was written in response to a news article on July 3, 2020, by the NY Post about a quadriplegic gentleman who was refused Covid-19 treatment simply because of his disability. https://nypost.com/2020/07/03/quadriplegic-dies-of-covid-19-after-hospital-refuses-treatment-family/ }

As a 5th grade teacher, one topic I had to teach each year towards the end of the year was about the Holocaust — in terms a 10 year old could comprehend. As a teacher, this was a difficult subject, but I took the importance of it very seriously. For most of my students, this was the first time they had ever heard of it. This subject opens a door, that once opened, can never be closed again. It marks a very specific end of innocence. I took this very seriously.

I was very careful to not show extremely graphic photos or list unfathomable atrocities. (They would see these soon enough as they grew older.) All parents had the right to opt their child out of this instruction. I never had even one parent opt out.

I always began my instruction by telling them a little story. You see, if I had been born back then, none of the surgeries I had that allowed me to walk or live a normal life would have been available. I would have ended up in one of the many “hospitals” (warehouses, actually) for people who were disabled. I never would have walked, and I would have been a burden to my family.

The Nazis, you see, didn’t actually start the Holocaust with the Jews (although their hatred of them was absolute.) They “tested the waters” with a different population. They started with the disabled, both physically and mentally disabled, and they made no distinction between babies, children, and adults. The word they used was “life unworthy of living.”

The doctors and nurses involved were complicit, as they chose which people, which babies, which children, which adults, were worthy of living, and which were not. They did not make these choices with deep caring concern for their patient’s well-being. They were not seeking to end their “misery.” They decided, very systematically, which were a burden on society, and they singled them out, and sent them to special “hospitals” for “treatment.”

They knew it was wrong, because they lied to the families of the “chosen” people. If they had thought it was the right thing to do, why not shout it from the rooftops, instead of using lies and subterfuge? They told families that these children and adults had suddenly taken ill, and needed special treatment. They put them on buses and sent them to special “hospitals.” Then they slowly, painfully, starved them to death.

In some cases, they injected drugs to cause the end more quickly, especially with vocal, mentally handicapped people. And they even used poison gas in rooms disguised as showers, because some of the medical staff’s mental health began to suffer from the slow, tedious starvation deaths. They decided to use something quicker, not to benefit these patients and end their despair, but to spare the medical staff from seeing the slow, agonizing deaths day-in and day-out.

Then they sent false letters and death certificates to the unknowing families, claiming these “chosen” people had died from natural causes like pneumonia.

These were not ignorant, uneducated people who did this. They were doctors and nurses, many of them were the top of their class and high ranking in their profession. Many convinced themselves they were doing this for the “greater good” and the benefit of mankind.

The chose themselves as the arbiter, the decider, the judge, and the executioner. They held themselves as the authority of who is worthy of life, and who is unworthy of “wasting” resources in our society. They assigned a value to human beings, and eliminated those they felt did not contribute significantly.

This series of mass murders by the best and the brightest of their medical institutions basically went unnoticed or un-confronted by society. Many who did know either felt helpless to stop it, or actually agreed with the decisions. And this was the start of it all, this thing we call the Holocaust. There was no uprising in response. There were no demonstrations. It happened quietly and without anyone choosing to stand up and say “this is wrong.”

And so, the Nazis felt empowered, the “Final Solution” began – this time it was directly aimed at the Jews, homosexuals, Poles, political dissidents, and others deemed to also be inferior and unworthy of life.

It has never been Man’s place to decide who is worthy of living, and who is not. This is a moral issue humans have struggled with for generations. I realize it is a narrow line between the rights of majority and the rights of “hopelessly” disabled. I realize that sometimes it is a choice made with the disabled person’s best interests in heart – not wanting them to physically continue suffering, but in this situation, that was not the case.

If this had been a case of one ventilator and two dying patients, and only one could be chosen to be saved, I would pity the medical professional who had to make that tragic decision and try not to second-guess it. But that wasn’t the case in this situation. The claim that there might not be enough ventilators was a “what if” decision — a “what if we use the ventilator on him, and then another more-worthy-of-life person then needs it?”

So in this case, I question the decision that was made. I’m not reminded of the kind, tormented family member who sees their family member in agonizing pain and decides to stop artificial means of respiration. Instead, I’m reminded of those fateful years back in the 1930s, when doctors and nurses, encouraged and instructed by a political machine and one man’s blithering insanity, to decide what makes a human life worthy of living.

I’m reminded of what happens when humanity turns a blind-eye to mere humans making the choices of God and the universe.

If you read history, then you know the phrase “life unworthy of life” (in German it is lebensunwertes leben.) It was a Nazi designation for the segments of the populace which, according to the Nazi regime, had no right to live, and who were targeted to be euthanized by the state, usually through the compulsion of their caretakers. They were seen as inferior and unworthy of life, and were treated accordingly.

“Those who do not learn history are doomed to repeat it.” Make no mistake, I do not compare those medical professionals who decided that life as a quadriplegic was not life worthy of life to the Nazi regime. But I do see that slippery slope of mere mortals deciding the value of life based on their preconceived notions of who is “worthy of life,” and who is not. It is a line, once crossed, that becomes blurred beyond recognition.

Life with a Disability

Originally from Michigan, I’ve spent most of my life in Virginia and North Carolina. An avid writer, I now reside in sunny Florida.

Born with a congenital skeletal abnormality called bilateral congenital hip dysplasia/dislocation (also sometimes now called bilateral developmental hip dysplasia,) I was born without functioning hip sockets or joints. I began treatment at the ripe old age of 24 months old.

I’ve had a variety of procedures to allow me to walk, including multiple femoral osteotomies, acetabular osteotomies, a PAO, fractural lengthening/release of paoas tendons, bone realignment, notching procedures, bone spur removal, multiple bone grafts, avascular necrosis repair, and two total hip replacements. Right now, I’m waiting on a hip revision to repair my 24 year-old right hip replacement, which has worn out.

I’ve run the gambit when it comes to mobility. I’ve walked with a limp, a waddling gait, and Trendelenburg gait. I’ve had braces, body casts, and more surgeries and treatments than you can imagine. I’ve had to use canes, dual canes, hiking sticks, crutches, walkers, rollators, and now, even an electric cart to get around.

Throughout my life, I’ve had many physical challenges. Severe muscle weakness and atrophy in my legs, and limited abduction are the biggest issue. Multiple surgeries in the same areas have left me with nerve damage, and spondylitis has left me with a balance impairment. But then, about ten years ago, I started having some medical issues I simply couldn’t explain.

First, came some very strange rashes. My balance became more affected. I started feeling a numbness in my hands and wrists. I honestly thought that was because I use a rollator, and that puts so much pressure on your hands and arms. It made sense, so my doctor and I didn’t explore it further.

I began to have generalized weakness in my legs and core, and much greater difficulty in walking or standing. That isn’t so unusual for someone who has had so many surgeries. My doctor sent me to have some more physical therapy. It helped a little, but then it quickly faded, and the problem reappeared with more veracity.

Then came the fatigue. No matter how much sleep I got, I had trouble staying awake during the day. We even looked into seeing if I had narcolepsy, but I didn’t have that. Even if I went to bed at 8:30pm, I was still exhausted the next day. The exhaustion never went away.

Again, we explained it away. I was working full-time at a very demanding job and caring for my father, who had Alzheimer’s. We assumed that was the cause of my exhaustion. Truth be told, I was so busy taking care of my father and all of his medical appointments, that I started neglecting my own medical care. I’ve paid a very heavy price for that.

Last year, after my father passed away, I moved to Florida, and just weeks after I got here, my medical issues became so intense that I could no longer avoid them. My hands kept “freezing up” as I slept. My fingers curled and were stiff and swollen. I assumed this might be rheumatoid arthritis, because my mother had RA. My back and neck became stiff. My exhaustion made it almost impossible to do anything.

And then one night, I got up to use the restroom, and my back was “frozen.” I fell, and ended up in the hospital. The next weeks and months were a whirlwind of finding doctors in my new home state, getting in to see specialist after specialist, as we tried to figure out exactly what was wrong.

Some of the treatment helped a little, but it was all “hit or miss” since we really didn’t know exactly what was wrong. After a seven month wait, I finally got in to see a rheumatologist.

After reviewing all my medical records and history for the past twenty years, running dozens of x-rays, ultrasounds, bone density scans, and more labs than anyone can imagine, my rheumatologist knew exactly what was wrong. I didn’t have rheumatoid arthritis. I had a fairly uncommon autoimmune disease called psoriatic arthritis (PsA.) My doctor felt I’d had this for at least 15 years. It isn’t uncommon for PsA to be mis-diagnosed becasue people look at the symptoms and never put it all together to see the disease.

The PsA didn’t come alone. It brought with it diabetes, high cholesterol, high blood pressure, kidney failure, liver damage, gallstones, connective tissue disorders, enthesitis, crippling arthritis in my fingers and toes, neuropathy in my feet, spondylitis, psoriasis rashes, thinning hair, dry, itchy eyes, blurry vision, dry mouth, mouth sores, inflammation, and stiff, swollen joints. Some of these are symptoms of PsA, while others are co-morbidities.

I never in my life thought I’d wake up “sick” one day and find out that I was never going to recover. That is the reality of chronic autoimmune diseases like PsA. There are some treatments, but there is no cure.

So that is what this blog is about – my journey through living with a lifelong disability coupled by a chronic disease. This may sound discouraging and overwhelming, and truthfully, sometimes it is, but this is also the story of hope, determination, and forging a new life in the face of adversity.

I hope you will become an active participant in my story, by leaving your comments and sharing your frustrations and your uplifting experiences. As my grandmother used to say, “A burden shared is a burden halved.” Let the sharing begin!

Welcome to My World

Starting a blog is an idea I’ve thought about for a while. I enjoy sharing my ideas and experiences with others. I realized the therapeutic power of writing as far back as 4th grade. It is a format that has served me well throughout my life.

I especially want to thank my friend Leeann for encouraging me to start this blog. The support of friends is what makes life worth living.

And so I begin. I hope you enjoy the show!