What I'm Afraid to Talk About as a Person With a Disability
Medication-induced insomnia really gives you a lot of time to think. There’s something so disgustingly familiar with staring at the ceiling at 3 A.M. contemplating my existence that I’m hardly bothered by it anymore.
Until, inevitably, I am.
Until the conversation I’m having with myself starts to drive me a little up the wall. No, my friends don’t secretly hate me. Yes, I’m sure, yes, I know we’ve cancelled on them three times this week, but it’s fine. And you write and delete a message to someone – anyone – 10 times but realize asking someone if they hate you daily is probably not conducive to them continuing to like you. So you eventually throw your phone on your bed and mope.
But that’s not really it, that’s not the crux of the issue really.
And this is the part I don’t say. This is the part I don’t say because I’m damn near terrified it’s true and nobody has the heart to tell me.
I feel like I’m useless. I feel like I have nothing practical to offer. I feel like I can’t even walk at the speed required for existing, let alone contributing and thriving.
Let me clarify something here. I am not looking for a pity party. I am sure I’m not alone in this. The society we live in places intrinsic value on the ability to work, but for some people that’s not actually easy or feasible. But we’re so scared to talk about it.
I can’t possibly expect my friends to know that I’m crying past midnight over the dread of summer heat approaching, over my inability to take steps like others can, over the knowledge that it’s never going to stop hurting… if I don’t tell them.
The thing is, just trying to keep up with everyday life is exhausting. I go to university three days a week, tops. That’s my “functional” and it borders on too much. I spend most of the rest of my time in bed. Leaving my house is exhausting. Cleaning the kitchen is exhausting. Making lunch is exhausting. Eating, in and of itself, is exhausting.
Before I got sick, I used to stay up all night to write assignments. The next day I’d be hazy, like I was running on a two second lag. I feel like I did the next day at school these days. Every. Single. Damn. Day.
There is a minimum life requirement to get a job, eat, clean and groom. That is nobody’s fault, it’s just the world we live in. The concept that I could be functional for that many hours a day is laughable. Maybe when my symptoms are low. Maybe when it doesn’t hurt so much. Maybe when I’ve drunk enough water, eaten enough salt, taken my meds, gotten a good night’s sleep. Maybe. Maybe, maybe, maybe.
But if I can’t, if I never can… well, I dread that reality. And why? Should it make me any less of a person?
Until now, I’ve been content to yell about capitalism and move on. But there is something fundamentally dehumanizing about not meeting the “minimum standards” of being a person. And sometimes, at 3 a.m., I stare at my ceiling and wonder how many more “inspirational” stories of disabled people working three jobs so they don’t die will be shown before someone finally gives air to the voices who are saying we deserve better. That people shouldn’t have to do that.
To anyone who’s ever stared at the ceiling, in pain or fatigue or any other hellish symptom combination, and wondered whether it’s even worth trying anymore – I see you. I’m there with you. I get you.
And I think we’re worth far more than the sum of our parts.
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