July 20, 2016 by Darlene McC
There are a half dozen types of Ehlers-Danlos Syndrome; and while I’m unfortunate enough to have it, I don’t have one of the types that will kill me. We think.
I also do a diligent job of caring for myself. After learning 9 years ago that my ligaments are shit I started working on what I could control: my muscles. I got as strong as I could to keep my joints as stable as they can be. Despite these efforts, I was recently hurt and went to a new ortho who has some…concerns.
On the new docs orders, today I went to the cardiologist for the first time and experienced the odd doubt I’ve been getting for the past few years. Something infuriating. Something that happens all the time: people don’t believe me because I look big and strong.
How could I have a hypermobility disorder if I look the way I do? I’ll tell you how: Hard. Fucking. Work.
It took 5 years to earn the right to run, even a little. I trained my ass off to get to snatch a kettlebell, building safe ranges of motion and strength. And every time I rush I pay for it.
Today I go in to this new doc and he treats me like a stupid kid. As if I was misdiagnosed all those years ago and my joints are only sore from lifting. Granted, it’s my orthopedist who sent me to him, and I haven’t been allowed to lift in 2 weeks…but no matter. I must be making it up.
So he does an EKG and hints at a misdiagnosis. I tell him I’m not some a-hole boot camp Trainer and he can see I’m offended. After a big hint again, I casually fold in my multiple dislocations, the collapsed arches, the TFC surgery, and the years of PT.
“Oh. You didn’t say you’ve had disloactions”
“You didn’t ask. I asked if you wanted a list of my joint injuries…”
“Well I’m starting to get a better picture.”
And suddenly my pain is legit and I’m ordered to get an echo next week…to verify I don’t have the type that can kill me. Which is what I was there for.
Great work, doc. I’ll see you next week I guess.