invisible illness Archives - 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

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

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

Chronic Illness and Work

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

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

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

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

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

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

The Hidden Energy Cost of Basic Living

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why Chronic Illness Makes Consistent Work So Difficult

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

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

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

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

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

Pain, Medication, and Employability

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

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

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

Why the Math Doesn’t Work

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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