Wife Wednesday · Episode 15 · Invisible Disabilities Week

But You Don’t Look Sick

Welcome back, friends. It has been an eventful week already, one that started great and ended pretty rotten, and it happens to land squarely on Invisible Disabilities Week, which runs October 18 through 24 this year and has been hosted by the Invisible Disabilities Association since they founded it back in 2014. The Association has a book and a set of pamphlets that have been mailed all over the world, and the title on them is “But You LOOK Good!”, which is about as close as anyone has come to printing the one sentence our household heard more than any other when Melody’s journey began: “You don’t look sick.”

Our household lives with hidden disabilities, plural, and before I was ready to admit that I was Autistic, I was already pretty passionate about awareness of them, because of that one phrase. It’s interesting to sit with what “you don’t look sick” actually means when you take it apart, which is something like: I have an expectation of what sick looks like, you do not fit the criteria, and so now I must scrutinize what you tell me, because the two don’t match.

I know that sounds harsh, but in my opinion that is where ableism begins, in a passing comment that nobody thinks twice about, and it only festers and grows from there, and ableism, more than any diagnosis, is the most disabling part of a hidden disability. I also know what some of you are thinking, “here we go again, more of that Autism stuff,” and you’re only partially right, and we’ll get there.

“You don’t look sick” really means: you don’t match my picture, so now I have to doubt you.

What sick is supposed to look like

Some disabilities have a look, and that look does the explaining for you: a wheelchair, a missing limb, a cane, something in the way a person moves or speaks that tells a stranger, before a word is said, that this person may need a little more room or a little more patience.

When Melody’s CKD began, I was overwhelmed with learning about kidneys and human anatomy, and I honestly thought I had arrived the day I could look at a lab report, find the GFR and the creatinine, and explain to someone else what they meant. Then dialysis began and we were launched into home hemodialysis, and I thought I had an advanced degree, which, knowing what I know now, is adorable.

I spent so much time trying to get people to understand that she may look perfectly healthy, and that is a great act, a performance she pays for later, because this is what dialysis and chronic illness actually look like: multiple specialty providers, a calendar that belongs to the clinics, and decisions about the future that never once crossed our minds as topics needing details.

This week is a good example. Two days after a big weekend, Melody ended up at the ICC, and she is still feeling pretty miserable. An ICC day is not just a long day, it’s a total change of routine and a sensory nightmare: bright lights, alarms, pumps, strangers, a chair that is not your chair, and hours of it. If you had passed her in the hallway on Saturday, you’d have said she looked great. That’s the whole point of this week.

The other hidden one in the house

Now for the part you thought was coming.

Autistic adults tend to take things literally, a tendency researchers have studied for decades, and that’s fairly well known by now. What’s less known is the other half of it: we pay attention, all the time, to everything, and so we calculate. Some of us have reached the point where we know our limits well enough to run the numbers on our own stress load, how much it lowers our ability to mask, and which situations will cost more than we have to spend, and then we choose, deliberately, to participate or not. Notice, though, who’s doing all that math. The burden of the disability lands on us, the same way it lands on a wheelchair user who shows up to find there’s no ramp: the building didn’t adapt, so the person has to.

Masking, in plain English

Masking (researchers also call it camouflaging) is performing “normal” in social settings: copying expressions, rehearsing small talk, holding back reactions. It works, which is why people around an autistic adult often have no idea how much it’s costing. Autistic adults in the research describe it as exhausting, and as something that builds up over years. (Hull et al., Journal of Autism and Developmental Disorders, 2017)

So let me tell you a story. Not a confession, and not a complaint, just a story, the way a man you met on the street might tell it to you, the kind you can’t quite shake afterward. Nobody in it needs a name. There’s a family, a long-standing tradition, a newcomer, and an Autistic man who has been around for a long time. We’ll call him the photographer.

For each part, I’ll tell you what it looked like from the outside, and then what was actually happening.

The dinner

The photographer had just come off a long, hot festival day, the kind of day where the noise and the crowds and the heat fill the tank to the brim, when he was told that tonight they were all going to dinner to meet the newcomer. At a steakhouse. The photographer is plant-based. The entire dinner was a series of probing personal questions, aimed at a man who warms up to new people slowly, and the newcomer did not like how slowly.

What it looked like: a quiet, guarded guy who didn’t seem interested in getting to know anyone.

What was happening: a nervous system that was already full before the appetizers came. A surprise plan, a menu with almost nothing he could eat, and a stranger asking question after question, each one a demand he had to process and answer on an empty tank, while in the background, all at the same time, he was working out which rules applied tonight, what to order and how much, based on who was paying. Slow to warm up isn’t cold. It’s someone gathering enough information to feel safe.

Christmas

For as long as the photographer could remember, Christmas dinner had been the same: the same tradition, carried down to a second generation, in the same place for something like fifteen years. A week or two before Christmas, while the newcomer was still, as far as the photographer was concerned, at the stranger-danger stage, word came down that Christmas would be at the newcomer’s house instead. A place the photographer had never been, though the rest of the family had. There was no conversation about it.

The newcomer has a voice built for tarmacs, and a habit of steering every conversation, on any topic, no matter who is speaking, which means a constant, loud, unbroken volume in a room that is suddenly not shaped the way it has always been shaped. When dinner came, a plate had been prepared for the photographer, mostly meat. The family knows he’s plant-based.

He did not behave properly, of course, and the verdict came down the way it usually does: he’s different, he doesn’t like us.

What it looked like: a man being difficult at Christmas.

What was happening: for many Autistic people, predictability isn’t a preference, it’s how the nervous system stays regulated, and a tradition held for decades is about as predictable as life gets. Take away the place, the structure, and the familiar faces’ usual roles, add sustained loud sound and a meal he can’t eat, and you’ve removed nearly every support at once. Many Autistic people rely on safe foods, a short list of foods they know their body and senses can handle, and in a new place, under stress, that plate stops being a meal and becomes one more thing to survive. Add a near-stranger as host, and the hypervigilance goes up too, because for many of us the stranger-danger stage lasts longer and runs hotter, especially when someone’s behavior pattern-matches to people who have hurt us before. Masking is the first thing to go when the load gets that high, and what’s left looks like rudeness to anyone who doesn’t know what they’re watching.

The research, briefly

Autistic people consistently report higher intolerance of uncertainty, the difficulty of coping with the unexpected or unknown, and it’s strongly linked to anxiety (Jenkinson et al., Autism, 2020). About six in ten autistic people are over-responsive to everyday sound (Carson et al., Journal of Autism and Developmental Disorders, 2022). And autistic adults tend to prefer familiar foods and avoid particular textures and strong flavors, which is where “safe foods” comes from (Kuschner et al., Research in Autism Spectrum Disorders, 2015).

The roof

When a winter storm collapsed part of a roof, the photographer stopped everything and raised a second-story roof on a 20-by-40 building, by himself, and sent photos along so the family would worry less, since the danger was handled. Every reply was a critique from the newcomer, and plans for how he’d come over and do it himself.

So the photographer stopped sending photos. And stopped visiting when the newcomer would be there.

What it looked like: he pulled away from the family.

What was happening: this is a response many Autistic people describe, and one of the least understood. We correct by taking action, and the action is often cold, or a matter of removing ourselves entirely. It isn’t sulking, and it isn’t punishment, it’s self-preservation: if sharing reliably brings criticism, the quiet, logical fix is to stop sharing, and to stop spending time in the situation that drains you. It looks like withdrawal. It’s actually maintenance.

The memorial

When a family member died, the photographer was asked to photograph the memorial, as he’d photographed nearly every family function for over a decade, and he provided professional audio equipment for the music too. He wasn’t given time or space to say goodbye himself, but he knew, as a photographer, how much these moments matter, and honestly he was glad to be included and given something to do, because otherwise a memorial is quite an awkward place to stand.

When he arrived, the newcomer yelled at him about where his equipment was plugged in. The photographer did his setup, his lighting tests, and started the opening shots. Shortly after, just as the family was arriving, the newcomer walked over, got in his face, and threatened him and his equipment if he didn’t stop taking pictures.

The photographer said okay. He wanted to pack up his gear, but for the sake of the day, he left it, and quietly walked out.

Afterward, the photographer put it in writing: given the threats, do not contact me. Months later, the newcomer texted him anyway. The newcomer did apologize for the memorial, eventually, to someone else.

What it looked like: an overreaction, a man storming off a memorial and making a big deal out of nothing.

What was happening: the photographer took the threat literally, because that is what a threat is. And when you know your limits, you also know there are moments when, if you don’t walk away, you’ll respond in a way you can’t take back, so he walked away, which was the most controlled option available to him. The written boundary wasn’t drama either. When we say a thing, we mean it, and we’ve usually already run through every possible action and outcome before we say it. Sometimes the calculation says the best move is to call someone’s bluff and simply mean what you said. You know, because we’re so dumb and literal and need to be talked to like children.

When we say a thing, we mean it. We’ve usually already run every possible outcome before we say it.

Bend, then break

Here’s the part of the story nobody sees, because it happens on the inside. The photographer doesn’t break at the first offense. He bends. He absorbs. He makes allowances, again and again, for years, until one day there is nothing left to bend, and then he’s done, and it looks sudden to everyone who wasn’t counting. It wasn’t sudden. Things land on us differently, and sometimes they land much later, but they land. And the photographer isn’t carrying only his own load: he’s also his wife’s buffer to the world, the one who absorbs the noise and the phone calls and the people so she doesn’t have to, all while living inside the slow, constant weight of a terminal diagnosis, which leaves very little left over for masking.

Autistic burnout, defined

Researchers describe autistic burnout as “chronic exhaustion, loss of skills, and reduced tolerance to stimulus,” brought on by life stressors adding to a cumulative load, with no way to get relief from it. The study’s title is a participant’s own words: “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew.” (Raymaker et al., Autism in Adulthood, 2020)

What it cost

The family’s version of this story is simple: he got distant, he doesn’t like us, he’s different.

The cost is simple too. Not long ago, the photographer’s wife, who lives with a terminal illness, celebrated a milestone birthday, and he was not welcome there.

That’s the price of a hidden disability that nobody bothered to understand. Not a dramatic fight. Just a quiet closing of the door, built out of years of “he’s being difficult” that were really “he’s at capacity.”

Easy things to think about with people in your life

You don’t need a degree in any of this. A few small things go a very long way:

• Tell them early about changes. A week’s notice and a reason beats a surprise, every time, and a quick “here’s what to expect” costs you nothing.
• Quiet isn’t cold. Slow to warm up usually means gathering information to feel safe, not judging you.
• Watch the volume. Loud, constant sound is physically draining for a lot of people, not just irritating.
• Remember the plate. Food needs and safe foods aren’t fussiness, and remembering them is one of the simplest ways to say “you belong here.”
• Believe the boundary the first time. If someone tells you plainly not to do something, they mean it.
• Distance is information. If someone pulls back, ask what’s been costing them, instead of deciding they don’t like you.

This may sound harsh, but it is the reality of many Autistic people, and I suppose many neurodivergent people in general, in ways much deeper than even their closest circle knows. I know, another awareness week, another “celebrate something” day. I used to think that too. But I’ve come to understand the hard reality of why awareness matters, especially with the people you already know and think you know well. You may be surprised at how much they’re masking, and how much it costs them. And someone who is disabled shouldn’t have to keep proving it, constantly, to the people who are supposed to know them best.

“Oh, I know all about Autism.”Do you?

Next week, we’ll talk about where all of this starts: ableism.

Sources: Invisible Disabilities Association, Invisible Disabilities Week 2026 · Hull et al. (2017), “Putting on My Best Normal,” Journal of Autism and Developmental Disorders · Raymaker et al. (2020), Autism in Adulthood · Jenkinson et al. (2020), intolerance of uncertainty and anxiety in autism, Autism · Carson et al. (2022), auditory sensory over-responsivity, Journal of Autism and Developmental Disorders · Kuschner et al. (2015), food selectivity in autism, Research in Autism Spectrum Disorders · Vicente & Martínez González (2021), the literalist bias in autism, Estudios de Psicología