“Do not let your disability define you”

by Veronica on April 15, 2015

in Ehlers Danlos Syndrome

It’s what I hear, over and over. “Don’t let your disability define who you are! You’re not your disability!”

See, the thing is, it does define who I am. By its very nature, disability defines who you are as a person. I am not separate from my disability. The part of me which relocates joints, and vomits at 2am, and takes the highly addictive pain medication I need to function – I can’t just cut that bit of myself out and throw it away.

I am disabled.

Ehlers Danlos Syndrome is a sneaky disorder in that it often presents as an invisible disability. I am not (yet) in a wheelchair. I am not visibly sick. I don’t have a mark on my forehead you can see, nor do I wear tshirts which say “I AM DISABLED AND IN PAIN PLEASE DON’T BE A DICK” although maybe I should.

Yesterday I did something to my wrist. The pain shot from the tips of my fingers to my elbow. Crippling debilitating pain. I couldn’t move my arm, or type, or use a mouse – let alone make soap or body products, that handy thing which actually allows me to pay my bills lately. I was incapacitated.

And let me tell you, it hurt, and I wandered around the house looking piteous and waiting for my pain meds to kick in.

Eventually something went CLICK in my shoulder and like magic, the pain eased, leaving behind only an ache in the bone. I had wondered if I’d pinched a nerve when my shoulder slid around, and there it was, the proof was in the relocation.

Which all goes to say: Mostly I look fine, but if I do not let my disability define what I can and can’t do, then I get sick. Sicker. I push too hard, to fast, and wind up in bed for a week. I get seriously unwell, and I can’t regulate my own body temperature or blood pressure. I can’t keep food down, or stand up without being dizzy. And when these things happen, my ability to use my muscles to keep my joints in position becomes severely hampered and I end up a little puddle of bones and goo and pain, none of which goes together in the correct order.

So it’s important to me, to let my disability define me.

I’ve been pushing too hard lately, and everything fell down around my ears early last week when my blood pressure refused to rise and I spent two days on my back with my legs in the air eating salty chips. Not unlike my attempts to get pregnant, it was frustrating and awkward at times, and eventually it passed.

It passed because I listened to my body, mainlined salt and electrolytes like they were going out of fashion, and let myself heal.

Well, sort of. I still had to do two markets in amongst this and all I can say is thank god for adrenaline.

The social model of disability suggests it is not my body which is the problem, but society’s refusal to accept disability and make allowances for it. This is why I work for myself, not in a full time job. It’s why I structure my life the way I do, and it’s why I still have to field statements like “don’t let it define you!” and “you are not your disability.”

Well meaning statements, true, but idiotic all the same.

My disability is not something I can just turn on and off. As much as I would like to leave my house more often, I don’t. A wheelchair is in my future, somewhere. These things are part of who I am and how I identify with the world.

I can’t just remove them from my psyche.

Trust me.

Jessie (@NearAsDammit) April 15, 2015 at 2:07 pm

This is really thought provoking, you are right- something that is part of you shouldn’t be ignored. It is not the whole you but it is part of you. To ignore it, rise above it etc is to deny part of you exists.

Bronnie - Maid In Australia April 15, 2015 at 3:21 pm

That’s a very good point Veronica. No one knows our bodies like we do. And there are certain things people with disabilities cannot do. That’s a fact. And there are times when we are more able than others and time when we are incapacitated. We unfortunately must let our conditions define us to an extent – or at least, what we can do. Or cannot.

Kathy April 16, 2015 at 2:40 pm

Sing it, sister!

river April 16, 2015 at 5:01 pm

I’m imagining your future with the kids fighting over who is going to push you around. (*~*)
Take things as easy as you can okay?

Alison April 17, 2015 at 7:30 am

Sorry Von, I have nothing to offer but this xoxo

Marit April 22, 2015 at 4:52 am

Hey Veronica,
Saw this blog and thought of you.


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