Being Disabled(ish)

I’m disabled(ish).

Or healthy(ish). Or okay(ish). Or ill(ish).

Neither one hundred percent healthy nor one hundred percent ill. Not disabled enough to look disabled and yet not healthy enough to not feel disabled. I’m disabled(ish) and it sucks.

Being disabled is awful, my mom is – severely so. And no, I don’t wish I was ‘more disabled’. The thing is, as a fully paid up member of the species ‘human being’ I have the innate desire to fit in. I don’t fit in to the healthy category – my joint pain, dizziness and fatigue see to that- but I don’t fit into the disabled category either – I’m mobile, I don’t use aids (yet) and I’m not affected as badly as a lot of other people with my condition. So where does that leave me? Well, it leaves me in the disabled(ish) category – which isn’t even a thing.

When you notice your leg bending at a weird angle...

The thought process goes a little like this… a gentleman, seeing that I’m visibly uncomfortable offers me a seat on the train:

“would you like this seat?” he says, collecting bags and beginning to stand.

“no, no, don’t worry” I reply. I’m not that disabled.

People probably need to sit down more than I do. I convince myself that I’m only grimacing to make my pain more visible, rather than telling myself that I’m grimacing because I hurt. I don’t take the seat. I stand. My knees lock uncomfortably and my hip shifts around. But I stand. Because I’m only disabled(ish).

I’ve convinced myself that my illness is lesser, that people have it much worse, that I should grin and bear it. I just have chronic joint pain, twisted ankles, nerve pain, dizziness, clicky, clunky joints that like to slip out of place from time to time. I don’t, though, have chronic dislocations. I’m not bed bound. Or wheelchair bound. I can walk. I can exercise. I can smile and act ‘normal’. Surely those people are more worthy of help than me? They’re much more disabled. They deserve help. Me? Well I’m just disabled(ish).

My 'natural' elbow position - hyperextension

It’s also difficult not to make my disabled-ishness my identity, especially when I have to tell people because they can’t see it. Yet, there are a lot of things about me that you can’t see that are far more interesting. I paint and draw and have an art degree. I have a football season ticket. Aged 25 I get asked my age by stewards at the football (you have to be over 16 for a pat down…). I’m a proud vegan and quite a good cook. I write a lot and read more. I’m an auntie, a girlfriend, a daughter, a sister. I’m a million and one things more exciting than a joint hypermobility condition – but that is what defines me to strangers. It’s always the stuff I can’t do. And that ‘stuff’ is always as a result of my disabled-ishness.

Can’t have a night out – why? Because my joints hurt and my meds knock me out. Can’t pull some extra hours at work? No, because that 8 hour day plus commuting has utterly drained me. It’s an issue when I can’t do things – “oh she’s disabled” and it’s an issue when I can “how can you do that if you’re disabled?”. I am my illness, my illness is me and yet, I’m still only disabled(ish).

Hands like play-doh

I don’t have to suffer and yet sometimes I choose to. It’s as if I’ve invalidated myself so much that I can tell myself ‘I’m disabled’ – but I have a hard time when strangers see me that way. And an even harder time when they see me that way and see me as worthy of accommodations as anyone else with a condition – even though I only feel disabled(ish).

I know I’m not the only one who struggles with ‘not being disabled enough’- it’s tough when there are so many conditions out there that look more disabling than mine. But I have to learn to stop comparing. To stop myself when I think ‘others are worse off’. To stop for a minute and realise my experiences are my own and they are equally as valid. To recognise that pain is pain and my response to that, to ask and receive help is worthy.

I’ll end with a note for anyone feeling similarly. Your disability, your illness, your pain, your condition – they are all real. Your doctor sees it as legitimate. It legitimately makes life harder for you. So, when help is offered, take it. You are worthy of help. You are worthy of accommodations. To anyone who doesn’t struggle with the same, I say one thing – be kind, always.