As it’s EDS Awareness Month, I thought I’d write a letter to my nineteen year old self on the day I was diagnosed. It’s been almost 10 years since it was confirmed that I have Ehlers-Danlos Syndrome type III, but I’d suffered all of my childhood when I think back; it just got a lot worse after my hip surgery aged 13.
Today is the day; the day you no longer question your sanity, the day you get answers, the day you can put a name to what is going on with your body. It’s not the best day of your life by far but it is a turning point, the date is singed into your brain like you’ve been branded by a cattle prod. 06/06/06 – you’ll joke with your brother about how your alternative ways and condition are associated with Satan. You’ll remember everything about the day; how much the appointment cost because your parents had to pay for you to see a private consultant, how long you were sat in the room being prodded by the doctor, how you become aware of your extreme flexibility – can’t all people bend that way? Could I have been a contortionist?
The consultant doesn’t go into detail about this ‘syndrome’ he’s just diagnosed you with, but this condition, this combination of words, they’re part of you now. You’ll cry, not tears of sadness, but it’s not joy either, it’s relief, you have answers. You’ll also find out that scoring 9/9 on some scale isn’t something to be proud of. It wasn’t a test you wanted to ace. This half hour in the hospital is a defining moment – after years of doctors, consultants, psychiatrists, various therapies, you finally know.
It doesn’t get easier, in fact it gets a hell of a lot worse; there’s days when you think that the best option would be giving up, when you hate everything about yourself, when you feel like a burden and can’t cope with the pain any longer.
Imagine the worst pain you’ve ever felt? It was when you broke your hip, right? Amplify that by twenty and spread it over the rest of your life. It’s not that bad everyday, but more often than not it’s pretty damn close. Get used to the phrase, ‘chronic pain,’ that’s your life, my love.
It’s not all dark clouds and hell fires, you do some amazing things, you make the best friends you could ever wish for, your family is so supportive and your boyfriend worships you. So, despite all the crappy pain and unreliable health, you’re in a good place. You accept that you’ll live with pain and an army of demons but the people in your life, and the strength of your character make everything okay. You got this, you’ll always succeed. You’re a fighter.
‘Behind every exquisite thing that existed, there was something tragic.’