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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