To My Chronic Illness, From the Person Who Is Glad to Finally Know Your Name
Dear Ehlers-Danlos Syndrome,
Oh, hi there. I didn’t notice you for 25 plus years. Where were you hiding? My connective tissue? Well, I guess I wasn’t expecting that. I was working on the assumption that if there was a problem with my collagen that I’d melt into the ground like some sort of disappointing candle on a hot windowsill.
Maybe you could have written me a letter, dropped me an email or just thrown
up some kind of red flag so that I knew you were there. You were like a mystery, except there was no previous mention of the perpetrator. It took doctors well over a year to work out that it was none of the obvious characters like Mr. Arthritis or Mrs. Endometriosis. In fact, they were more inclined to doubt there was a mystery to solve in my body and preferred to believe I was making it all up. I knew you were plotting and wreaking havoc, but no one believed me and I didn’t know your name.
Don’t get me wrong. Now I that know you have always been here with me, it gives me a sense of relief. It’s not normal to be this sore or this tired all the time. I am genuinely injury prone and slow to heal. My sub-par general heath and allergies to the world are explainable now. I just wish it always had been and then I wouldn’t have been called lazy and work shy.
I feel like I spend my life swimming against the tide for a reason. You’ve always been pulling me back and pushing me down. I just thought everyone felt like this. I’m glad I now know your name; it stops me from blaming myself.
I have to ask, why me? Perhaps the odds just weren’t in my favor. I wouldn’t wish this on anyone. I just want to know why you chose me.
Just one last thing: Do you think that you could let me know when you’re planning a party with all of your chronic illness friends? I know conditions like you often come with a gang of buddies because that’s just how you roll, but I like to make plans, too. If I knew when you were planning a gathering, I’d at least make sure I had food in the house and clean clothes for a few days. I don’t think that’s too much to ask.
I hope one day modern medicine will allow me to understand you better and allow us to co-exist with slightly more harmony than the status quo. I’m stuck with you, at least unless doctors find a way to evict you from my body, in which case, don’t let the door hit you on the way out.
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