By: JANA GREENE
What good is getting an accurate diagnosis, if there’s no cure? A woman I follow on Social media posed this question and it got me thinking. She also has Ehlers Danlos Syndrome.
Knowledge is power, and it explained a whole lifetime of things.
Every day of second grade, I had to spend afternoons with a tutor after school because I held my pencil “wrong.” I physically cannot hold it that way. My fingers wouldn’t work, still don’t.
I’ve had bad migraines all my life.
I cut myself constantly with knives in the kitchen, even as a kid. I’ve managed to cut myself with safety scissors.
Buttons are the devil.
Physical Education class was a nightmare. I kept getting injured doing the simplest things, and “sat out” many times, resulting “F’s” in cthat class. Turned ankles. Sprains. PE teachers are MERCILESS. I was fussed at for “not trying.” Or worse – “faking.” Id love to look them up and let them know what’s up.
I thought everyone got dizzy tying their shoes, every time.
Having a super shitty immune function, was sick constantly. Wouldn’t find out until adulthood I have immune deficiency.
I was in some degree of pain at all times – every joint. As far back as I can remember. Of course as the laxity in my joints increases with age, the pain gets worse.
My ankles are so weak, I broke my right one in two places from standing getting up to pee in thre middle of the night. Just torqued it wrong. I was so accustomed to pain, I walked on it for 11 days anyway before going to the doctor.
I always required more anesthesia, which is a redhead thing and an EDS thing.
There was a reason my body cannot do autonomic functions adequately – tempature regulation, blood pressure – just can’t handle it. The fluctuations that were such a mystery all my life make sense.
The hyper-mobility made for some good “party tricks” – contortionist stuff with knees and elbows, etc., but I had no idea it was a medical issue ad a young adult.
Knowing what was wrong – even though there is no cure and no really effective treatment – was momentous.
It means the difference between managing symptoms with some chance of alleviating some of the severity. It means the enlightenment of your own body, after feeling like you were made defectively.
I’m not defective. Just sick. And that’s okay.
It’s gonna have to be.