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

Surviving Cancer Is Not the Finish Line

We talk about surviving cancer as though it’s the finish line. You ring the bell, everyone cheers, and you move on. What rarely gets mentioned is that sometimes the treatment that saves your life also leaves lasting damage that deeply affects your quality of life.

I can’t tell you how many times I’ve heard this whispered in private, “I’m grateful to be alive, but if I’d known how damaged I’d be after radiation and chemo, how much it would limit my life, I’m not sure I’d have gone through with it. I’m not sure I’d have agreed to the treatment.”

Most survivors barely dare to say that out loud, but we sometimes share it quietly with each other. The world assumes that once you survive cancer you’re beaming with gratitude, you live a wonderful life, and everything goes back to normal. What people don’t see is what many of us live with afterward.

Some end up with stents, feeding tubes, or ostomy bags. Some live with bowel obstructions, chronic diarrhea, constipation, or malabsorption that leads to malnutrition. There are fistulas and radiation damage that never fully heal. There is neuropathy, nerve damage, vocal cord paralysis, balance problems, hearing loss, or changes in memory and concentration.

Skin can become fragile and tear easily, and wounds may take far longer to heal than they once did. Bones can weaken, and joints can stiffen, making ordinary movement more difficult. Breathing may not come as easily as it used to, and the heart itself can be affected by treatment.

Hormones shift in ways that disrupt sleep, mood, and overall health. Fatigue is not occasional but persistent, and the immune system often never fully regains its former strength.

The daily reality can be far more personal.  You learn that you need to know where every bathroom is before you agree to go anywhere. You avoid long car rides and carry discrete personal supplies. Some survivors are left with digestive damage that severely limits what they can safely eat, and that can make eating outside the house feel stressful instead of enjoyable.

You have to calculate how long you can stand, how far you can walk, and whether there will be a place to sit. Sometimes, you decide it is safer not to go at all.

Along with everything else, there’s grief. You miss the body you lived in before every ache and twinge meant something. You miss the freedom of saying yes without having to think through every possible consequence. You miss the person you were before your life had to be rebuilt around limitations, and you grieve the future you once assumed was secure.

There’s another layer to all of this, and that’s the financial side of things.  Cancer treatment can financially bankrupt you.  Treatment costs more than most people have, and the bills don’t stop when treatment ends. The complications that follow often require ongoing appointments, medications, supplies, and procedures that add up quickly.

Even ordinary things like going out to dinner, attending a wedding, or contributing to a group gift can become stressful decisions when money is tight. For many survivors, the cost of staying alive slowly erodes financial stability in ways that are hard to explain to people who have never faced it.

Cancer doesn’t just affect your body; it changes your personality in ways you’d never expected. You stop being spontaneous because everything requires thought, planning, and a careful analysis of whether you can tolerate the consequences. Do you have the energy? Can you drive that far or ride in a car that long? Will you be able to park close enough? Will there be a place to sit? Is there a restroom nearby?

Instead of saying yes with excitement, you find yourself saying, “Let me check,” because you need time to think it through. You hesitate, not because you don’t want to go, but because you’re trying to be realistic about what your body can handle. Sometimes you end up canceling when you realize it will cost you more than you can physically afford. Other times, you wait so long to decide that the moment passes, and the choice is made without you.

Some friends or family members may think you’ve become distant or negative. They may wonder why you’re still talking about things they believe you should be over by now. A few may quietly decide that staying close to you requires more effort than they want to give. Simply speaking, they quietly decide that you’re too much work.

They don’t realize that while surgery and radiation can leave visible changes to your body, it also leaves damage you can’t see. They don’t see the numerous complications that now dictate what you can do, how long you stay, and whether you can go at all. They don’t see that movement can hurt, breathing can be strained, and fatigue often gets in the way. They don’t understand that you’ve had to rebuild your entire life around staying functional.

There is also an emotional cost that lingers long after treatment ends. You do not simply forget what your body went through. The procedures, the scars, the burns, the vomiting, the needles; and that vulnerability stays with you long after treatment is finished.

When you feel a new ache, you immediately wonder it might be.  Scans and follow-up appointments can bring a kind of anxiety that is hard to explain to anyone who has not lived it. And somewhere in the background, there is often a quiet panicky thought that you cannot quite silence; you wonder if it’s come back.

I’m not pretending that surviving cancer isn’t something to be thankful for, because it is.  But that doesn’t mean everything goes back to the way it was. It doesn’t mean the damage disappears, or that life feels simple and easy again. A lot of us are learning how to live in bodies that were permanently changed, and we’re doing it while people assume we should just feel lucky and move on.

If you haven’t walked this road yourself, I hope what I’ve shared here makes it a little easier to understand. And if you have walked this road, I hope you know you’re not wrong for admitting it’s been hard.

You can be grateful to be here and still be honest about what it cost you. Those two things don’t cancel each other out.


Cancer Always Has the Final Word – Jan Mariet’s A Day in the Life

Cancer Changes Everything – 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


Cancer Always Has the Final Word

Image of a teal ribbon, which is the symbol for cervical cancer.

It doesn’t matter if the ribbon is pink, or teal, or any other of a myriad of colors. It means another person has heard those heart-stopping words: You have cancer.

Once those words are spoken, disbelief does something strange. From that moment on, you barely hear anything else that is said. Or maybe you hear it, but you don’t understand it. You certainly don’t remember it. The words bounce around the room like sound effects in a movie theater, echoing without meaning, until everything turns into a kinetic blur.

And if you happen to be alone when those words are spoken, the first time you try to say them yourself, they come out one of only a few ways.

Sometimes they are choked out through sobs, leaving the listener struggling to understand what you are trying to say, only knowing that whatever it is has shattered you.

Sometimes they come as a low, gravelly whisper, barely audible, but powerful enough to silence the room.

And sometimes, you don’t say them at all. You keep them locked inside, afraid to even whisper the words you are certain you must have misheard, even though deep down you know they are true.

The unfairness hits hard. Why me?  Reality hits.  Why not me?

All the qualifiers the oncologist offers, “We’ve caught it early.” “The chances of getting this under control are promising.” “Surgery alone may take care of things.”  They ring in your ears. But your heart and your mind hear something else entirely. They see the worst. The awful realization that your life might be ending, and that there is still so much you planned to do. Wanted to do. Needed to do.

The people you might be leaving behind.
The good you always meant to do.
The changes you intended to make.
The challenges you believed you would someday meet.

All of it floods your thoughts and your body at once. It spins together into a blinding, hopeless spiral of the life you could have had, if only you had known.

But don’t we all know that life is finite? Fragile? And yet we are stunned when that truth becomes more real than we ever imagined it could be.

Reality is something we push aside while we live our daily lives. Sleep. Wake. Dress. Eat. Work. Repeat. Over and over, without much thought.

The plans we always meant to follow through on slowly slip away with each step we take and each quiet thought we set aside. The day-to-day cycle becomes the pattern. The pattern becomes everything. It spins until we barely recognize that there was ever anything else.

Until the word, barely spoken, speaks: cancer.  And the pattern changes so quickly it disarms us.

Now the pattern is appointments. Recovery. Radiation. Chemo. Maybe immunotherapy. So much stops mattering. The world shrinks almost overnight.

Nausea.  Retching. Exhaustion.  Malaise.  Shrinking.  An endless fog of confusion.  Alternating devastation and hope.

We live for the day this aggressive pattern ends. We wait to be finished. To be well. To continue our lives. We believe that once this is over, everything we dreamed of will still be waiting for us.  But cancer always has the final word.

For some, life itself ends the conversation. For others, the collateral damage left behind by the disease, and even more by the treatment, forces life to be reordered. Reorganized. Reassembled. Reimagined.

The things we mourned when we first heard that word are no longer possibilities. We recover. We mourn. We go on. But we are never the same.

Regardless of the ribbon color. Despite the unpronounceable name that both specifies and reduces our lives. Not even when survival is the outcome.

We return to a pattern. A slightly altered one. Waking. Dressing. Eating. Working. Resting. Dreaming. A life reshaped by a single word that still echoes, long after it was first spoken: cancer.


Cancer Changes Everything – Jan Mariet’s A Day in the Life

“I’m Fine” – The Reality of Surviving Cancer – Jan Mariet’s A Day in the Life

Products That Make Life Easier When You are Battling Cancers of the Mouth, Tongue, or Throat – Jan Mariet’s A Day in the Life

Products That Make Life Easier When You are Battling Cervical Cancer or Cancers in the Abdominal or Pelvic Area. – Jan Mariet’s A Day in the Life

Where Were You? – Jan Mariet’s A Day in the Life

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

Chronic illness and work are rarely a good match.  This image shows a woman with a chronic illness, dressed nicely for work and ready to go, except she has collapsed in exhaustion in an overstuffed chair.  The effort to get ready for work has taken all of her energy for the day, and she still has to get to work, do the work, get home, take care of the piled-up laundry, put the dishes away, and she is beyond exhausted already.

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

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 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.

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