This post is a PSA for any able-bodied people out there who want to be better allies to the disability community.
Gentle reminder to my able-bodied friends: don’t tell chronically ill people they don’t look sick & don’t tell disabled people they don’t look disabled.
Or at the very least, and only if it’s directed towards someone you know well - be really careful about it.
A few weeks ago, we went out with some new friends in Tokyo, and we had a really nice night - they are really lovely people & we would love to see them again. But the topic of my chronic illness & disability inevitably came up, being as it is a huge part of my life and affects why I do things the way I do, why I have a flexible job, etc. While discussing that I sometimes need to use a wheelchair to help me get around, one of these nice new friends said to me (in a way that I don’t believe was at all meant to be hurtful): “oh, but you look really able-bodied - you don’t look sick”.
I want to state, again, very clearly that I 100% don’t think this person was being malicious or mean.
But… ever since that night, I keep thinking back to those words. I can’t get it out of my head.
“You don’t look sick.”
Now I don’t want to speak for all chronically ill and disabled people here, but when people tell me I don’t look sick, or that I don’t look or seem disabled, it always makes me REALLY uncomfortable. And from conversations I have had online or IRL, I know it’s the same for many other #spoonies. Even though it’s usually intended as a compliment - it is a compliment that really backfires for most people living with chronic illnesses.
I wanted trying to pin down why that is. Why does it make me and others SO uncomfortable?
It should be a good thing - I mean, nobody WANTS to “look sick”, right?
I think the reason I feel so uncomfortable when people say that to me is because I had to fight SO hard to be diagnosed, with something that WAS ABOUT TO KILL ME without treatment, because to my doctors I looked like a young, healthy woman, and was often dismissed. I believe my first diagnosis was: “migraines, maybe a bit of anxiety, you’ll be fine” - while the real cause went unnoticed, and my immune system continued destroying my major arteries, narrowing them to the point where I very nearly had a stroke.
Funnily enough, had they simply checked my wrist pulse or blood pressure they would have realised I DIDN’T HAVE ONE - which definitely isn’t normal. But because I didn’t LOOK sick - checking my pulse or blood pressure was something no one had even thought to do.
A year later, I had to fight SO HARD to get benefits when I couldn’t work from the autoimmune disease that had ravaged my arteries and the chemotherapy I was on to combat it - but because I still didn’t LOOK sick enough, nobody took me seriously.
When I realised that I had slowly become house-bound because of pain, fatigue and a proclivity to getting stuck outside in public, unable to get home on my feet, I decided I needed to use mobility aids. Again, I had to fight SO hard for my doctors - my DOCTORS, who know just how sick I am - I had to fight so hard for them to accept that I even needed mobility aids, all because I don’t “look” like somebody who “typically” uses a wheelchair.
But what the heck is a chronically ill or disabled person “supposed to look like” anyway??
That’s just it. There is no way for a sick or disabled person to look. Yet not “looking” like a sick person leads to people with chronic illnesses and disabilities being discriminated against, to be thought of as lazy, unproductive, rude and unmotivated. It leads to people with chronic illnesses feeling the need to perform disability or illness for others. For example, I often feel like I should walk slowly or limp when getting up out of my wheelchair, even though I am usually quite capable of walking at a regular speed and cadence, lest people come up to me and accuse me of faking my disability and not needing a wheelchair. I’ve known far too many chronically ill young people who use a disabled parking spot - as they can’t walk far without pain - who have been screamed at, have their car scratched or are otherwise abused due to the fact that they don’t “look sick” enough to be using that parking space. Regardless of the fact that they are experiencing often extreme chronic pain and illness that ISN’T VISIBLE on the outside. There are real risks to “not looking sick”, and it’s something that those of us with invisible illnesses and disabilities face on a daily basis.
So this is why the sentiment “you don’t look sick” is not just an innocuous compliment. It can be extremely hurtful to say this to someone with a chronic illness, because that person has probably fought so hard to be recognised as someone who is sick - and they’ve probably also come to peace with the fact that they are sick, or identify with being chronically ill and/or disabled. They are likely proud of their identity, or are at least trying to accept it as a part of themselves and their lives. So saying “you don’t look sick” can not only throw up a person’s denfensive hackles, but it can also be a careless erasure of a person’s identity.
Again, I don’t think that most people who say this do so maliciously - I think it’s usually said with the best of intentions. And I don’t hold a grudge against anyone for making mistakes - only if they continue to make them and remain wilfully ignorant. Nobody is born woke - we’re all in a process of learning! And I process these kinds of things happening to me, again and again, by trying to turn them into teachable moments. If this causes at least one person out there to pause, think and change how they behave, or to broaden their perceptions of disability and chronic illness, and for one less chronically ill person or person with a disability doesn’t have to have this awkward, often upsetting interaction - then I will be very happy.
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