Thread by @MadelineDyerUK

Something that really sucks about having an invisible disability or illness is people automatically expect you to be able to 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 if; 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 THATS 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 do easily. 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 that 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-bodies 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 are 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

(Oh, wow, please excuse all the typos in this thread!)

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.

Wow! I didn’t expect this thread to reach so many people! But I’m so glad it has/is! Raising awareness is SO important.

Thank you, everyone, for all your kind comments and support. ❤️ Will try to reply to all your messages soon-ish!

By the way, this morning, I posted a (typo-free!) version of this thread to my blog: madelinedyer.co.uk/on-invisible-i…