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Dear Ehlers-Danlos Syndrome, I'm Angry With You Today

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When your illness is constantly trying your patience, it’s inevitable that you’re going to lose it occasionally. In accepting that losing my patience was OK, I decided not only to write a letter to my condition, but to share it with all of you — because there have certainly been days when I’ve needed to read one.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Brutal, fragile EDS,

What a journey it’s been so far.

You hid yourself for so many years, torturing me under the surface before I ever learned to walk — which seems heavily ironic considering I can’t much anymore. You gave me dislocations before I could even say the word, and hid them as “growing pains” and “clumsiness.” You taught me pain before I was old enough to even understand it wasn’t “normal.” You gave me a body that twirled into all the pretzel shapes my tiny gymnast heart could imagine. I had a happy childhood, was extremely loved and incredibly lucky, yet I never knew it was always being overshadowed by a countdown to my body’s complicated and painful self-destruction.

You gave me a red-raw throat from vomiting every day I had been alive until I was 16 years old, and now today are guiding me on a whole new adventure of gastric hell, taking away my ability to eat much solid food when I really need the energy it would give me. You gave me faints, blood pooling, orthostatic hypotension and tachycardia episodes every day, without knowing it was there to need to be treated.

You’ve given me scars that won’t heal, bruises that have been there so long they have bruises of their own. You stole my sight from me over a lunchtime at school, and you broke my mum’s heart when her 19-year-old-baby fell apart in her arms.
Leah using her white cane and wheelchair outdoors.

You worsened me every day until you had me at an average of 60 dislocations ever day. That was 21,000 dislocations in 2018 alone; and you’ve given me a need for pain relief most doctors wouldn’t imagine a teenager enduring. You’ve given me sleepless nights writhing and screaming until I don’t have the energy to fight the pain any more. You’ve given me nights I wasn’t sure if I’d wake up in the morning. You’ve given me weeks upon end so passed out from medication that I was awake for mere hours in a day. You’ve given me ambulance rides, middle-of-the-night hospital visits, and so many operations and investigations I lost count by the time I was 15.

EDS, you’ve put me through the depths of devastation. You’ve tried to take me down and I’ve crawled my way through each time — even when it gets continuously harder to do so. But you’ve made me a hell of a lot tougher for it. You’ve brought people into my life who are now the souls I keep closest to mine. You’ve given me a career I could have only dreamed of growing up, a passion, and have lit a fire within me that can’t be put out.

I have no doubt in my mind that we have plenty of painsomnia, plenty of vomiting and plenty of unbearable days in agony coming up for however long of a journey I have left to fight. But in a bizarre way, even on days like today when I truly loathe you, you’re part of me. And for that, EDS, I will always somewhat love you.

Originally published: January 31, 2019
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