On Invisible Illnesses and Disabilities

So, I have several invisible illnesses (POTS, OI, MCAS) as well as two genetic disorders (Ehlers-Danlos Syndrome and Coeliac Disease).

Yesterday, on the 28th August, I took to Twitter to express my annoyance at how people who suffer from invisible conditions are often placed in situations where they have to try to prove their disability to someone and justify the accommodations they need in daily life as they don’t look disabled and, unfortunately, simply aren’t believed. People have outright told me, “Oh, you can’t have that wrong with you because you look healthy.”

Well, that’s why they’re called Invisible Illnesses. But they are real.

And, within a few days, my Twitter thread about this topic sort of exploded. I wasn’t expecting my words to go viral, but I’m delighted at the opportunity this gives in raising awareness for what it’s like to live in a disabled body that doesn’t look disabled.

I thought I’d reproduce the words of my Twitter thread below–mainly because I was angry-typing it on my phone at the time, and there are A LOT of typos…so here it is without the typos! (Haha, if I’d known it was going to go viral, I would’ve typed it out a little more slowly and proofread it!)

You can also view the original Twitter thread here.

Something that really sucks about having an invisible disability or illness is people automatically expect you to be able to do everything an able-bodied person can. And then they’re surprised when you can’t…

(This is gonna be a thread, by the way…)

And when they (inevitably) say, “But you don’t look ill/disabled/etc.,” it feels like they’re questioning the validity of our illnesses and disabilities, like they don’t believe us because they can’t see how someone could have an invisible condition.

I have a loose spine due to Ehlers-Danlos Syndrome. I can’t lift medium or heavy items.

One time I was in a supermarket, about to pay. I had items in a wheelie basket, and the lady at the checkout told me to lift the basket onto her counter.

I knew I couldn’t lift it; not only does my spine and back constantly cause me pain, but if I lifted it, I’d have caused a (more) serious injury (which I have done before by feeling I had to lift something as it was expected).

When I told the lady I couldn’t lift it, she immediately wanted to know why (because I look healthy). I shouldn’t have had to explain myself, but I *felt* I had to. I told her my spine is loose.

And you know what she did? SHE LAUGHED AND TOLD ME THAT’S NOT POSSIBLE.

Again, she told me just to lift it and it wasn’t that heavy. I stared in disbelief. Ehlers-Danlos Syndrome causes loose joints and frequent dislocations. I’ve dislocated joints before (which have subsequently caused fractures) just by walking.

This lady made me feel very upset.

The lady at the till was very patronising, saying she’d have to “walk right around” to my side to lift the basket up, then “walk all the way back,” to do something she still believed I could easily do. I felt embarrassed, ashamed, and very close to tears.

Luckily, at that point, the man behind me offered to lift it for me (he’d listened to the whole conversation) and I was so grateful. But I STILL felt greatly ashamed–and I shouldn’t have.

Due to my chronic illnesses, shopping alone is a big deal for me. Not only can my joints dislocate easily, but I also have #Dysautonomia. Standing still (while queuing) makes my heart rate way too fast, and this often causes me to faint. I often need to sit down rather than stand.

I’ve received many comments from strangers who judge me for sitting down in disabled spaces or for asking for a seat; in their eyes, I look healthy. They can’t see my autonomic system is malfunctioning, that my blood pressure is dropping, or my joints are going to dislocate.

But just because you can’t SEE something, it doesn’t mean it’s not happening.

Some people are great about invisible illnesses and disabilities. But some people are not. And a lot of people need to be kinder.

So I guess what I’m saying is: don’t assume that everyone who looks healthy/able-bodied IS healthy or able-bodied. And do not question someone who says they medically cannot do a task (even if you think they can). You have no idea how harmful that can be for the person.

(I struggle a lot with feeling guilt over what I *think* I should be able to do, and being called out by strangers for doing something or for not doing something for medical reasons is humiliating, embarrassing, destroys confidence, and lowers feelings of self-worth).

Also, the nature of many chronic illnesses means symptoms change day to day. Some days I can walk, other days I can’t stand without fainting. Just because you see us having a good day, it doesn’t mean our bad days are lies.

“But you did X before so why can’t you now?” is a question I hate as it questions the validity of both our illness/disability and what we are telling you. We know our limits. We know what we can do. Trust us when we tell you.

Incidentally, it’s also normal for many disabled people to not need a wheelchair ALL the time and some can walk short distances/sometimes; wheelchairs aren’t just for paralysis, etc., but are needed for many other conditions too, including heart/neurological/muscular disorders etc.,.

Just wanna add: that day at the supermarket, I wasn’t waiting for someone to help me by lifting the basket up for me. I had started taking the items out of it one at a time and lifting them individually…which annoyed the lady because I was too slow.

Thus, because the way I did it was different (and adapted so I could manage an everyday task, given my disability), I got humiliated.

Since posting that Twitter thread, I’ve received many messages of support from both those with illnesses/disabilities and those without, and it really is heart-welcoming reading them. So, thank you! I’m doing my best to reply to all of them.

EDITED TO ADD, 31st August:

I’ve since been contacted by numerous reporters, and BuzzFeed has just published this article about Invisible Disability, featuring my tweets. I’m overjoyed at the awareness this brings to invisible illnesses and disabilities.

The support I’ve received has also got me thinking a lot about ways to further raise awareness, and so, yesterday, on the 30th August, I added this to my thread:

I’m a YA writer and the response to this thread has been so incredible and inspiring. (I also never imagined it would reach so many people!) I’m now really considering writing a YA book exposing the ableism that teens with invisible illnesses face.

This is actually something I’ve been thinking about for years. The problem so far has been that I write fiction to *escape* from my illnesses: my characters do what I can’t. But writing characters that people with invisible illnesses can recognise is SO important.

Now I feel SO motivated to write this story, but I want to make it a fun read too. Because some of the things that happened to me are quite funny. Like when I was 19 & hospitalised in an elderly patient ward. A nurse assumed my mum must’ve been the patient (& Mum acted annoyed).

I think getting the balance just right so it’s both serious (to expose the ableism) and fun (to keep it entertaining) is important. And, also, not everything would be about the illness. BECAUSE WE DO STILL HAVE LIVES.

I am equally overwhelmed with the response that this mini-thread about writing an own voices YA novel about invisible illness has received–because representation really is so important, and raising awareness for invisible illnesses and disabilities is a must.

I’m so delighted that my message has reached so many people.