Living With an Invisible Disability at 21

I turned 21 in November, and spent the following two days in bed.

I wasn’t hungover or recovering from some wild night, but so completely exhausted by my small dinner celebration in which I cooked for four of my friends and then sat at a kitchen table for a few hours.

It was absolutely lovely and I loved every part of it, but just the cooking and baking (which was not monumental by any means) had me in pain before the dishes were clean.

What would maybe be tiring for the average able bodied person, my disability makes beyond draining.

Yes, disability.

It’s not a dirty word, it’s my reality and it’s taken so much work in unlearning my own internalised ableism to get to a point where I can label myself as such without feeling uncomfortable, so I’m going to use it.

What I’m living with now is so different to what I was capable of a few years ago because of the chronic conditions I have developed.

At 17 I was a nationally ranked competitive swimmer whilst completing year 12, now leaving the house for an hour can leave me so depleted I can’t move.

I used to get up at twenty past five four mornings a week to train for two hours before school and now some mornings I wake up and my body is so tired I can’t even roll over.

The more I learn about my disability the more I look back at things that I thought were injuries or other body pains and tightness from swimming, but could have been warning signs that this is where I would end up.

For that reason, I’m glad that I decided to focus on university rather than swimming, because my body would not be able to cope with that intensity now and that would have been unbearably frustrating.

Living with a chronic illness is exhausting, but the thing that most people don’t factor into that is how utterly draining justifying my disability is.

I’m exhausted all of the time and I’m almost always suffering from at least one symptom, but to then have to justify my rest and the things I do to cope and to relieve my body adds a layer to this that I’m struggling to articulate.

Having someone tell you that you should be able to do something, or that a symptom you experience isn’t really a symptom or that it’s all in your head is the kind of thing that just makes you want to cry and scream.

In the same way as when I tell you a symptom (which no one living with any chronic condition or disability is required to do) and you respond by telling me that you experience that too, or that it’s normal.

You might be trying to make me feel better, but you’re actually invalidating my entire experience by deciding that ours align.

They don’t.

I live this, all of the time and for some reason as soon as you’re not able bodied people who are seem to think that your experiences and feelings are up for debate.

And then there’s the suggestions.

Some of these really do come from people with the best intentions, but the thing you have to understand is that we’ve tried everything.

And even if I haven’t tried what you want to suggest, all I hear is you telling me that you don’t think I’m doing everything I can to not feel like this.

Trust me when I say, you don’t hold the magic cure.

There isn’t one, and that’s part of what makes this so damn difficult to deal with.

I have to live with these conditions knowing that there is no end to this.

Knowing there are people who will never take my disability seriously, whether that be because it isn’t visible or just because a lot of it is related to my uterus.

And knowing that I’m in for a lifetime of having to explain myself and justify my limits and experiences.

It’s a lot to carry at 21, but what scares me is that if this is what I’m living with now what will it be like at 31?

I don’t really know how to come to terms with that, but for now just please don’t ask me to justify why I’m sitting down.

Love,

Mal xx