Matters of my Heart

1

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.”

No shit.

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.

One thought on “Matters of my Heart

  1. Kat-15 says:

    Ugh. I’ve had similar experiences in medical care. I have PCOS and providers have been doubtful I have it because I’m not obese and don’t have acne. Well, I work my ass off and follow all the rules regarding PCOS, and watch my diet like a hawk, so no, I’m not fat and yes I have PCOS. And it’s so hard to move past that when someone does that to you or looks at you like that. Sorry you had that experience, and go you for being a badass and doing everything you can to be your best.

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