Ehlers-Danlos: What it Means

I was recently persuaded to blog my experiences with Ehlers-Danlos Syndrome Type III, with the idea that it may be helpful to others.It seems to be it could be a downer for a personal blog, but in the hope it may be helpful, I’m giving it a try.

I’m used to a blank stare when I tell tell someone I have Ehler-Danlos Syndrome (EDS), even in a doctor’s office. When I try to save time by using “EDS” I end up having to restate, leaving me with a sense that many of my health practitioners don’t have a clue what I’m talking about, let alone going through. They don’t understand that fatigue and depression are part of the condition, that cross-system symptoms can all be due to an EDS flare-up, and that, yes, it keeps me from functioning.
My Primary doctors are actually the best at empathizing, even when they don’t understand. I often can’t believe the luck I have in finding this husband-wife team with an open-mindedness unusual in the medical profession. And they have quite honestly told me they don’t know much about EDS. They don’t try to bluff their way through an appointment like some of my more specialized doctors do.
Family, friends, and strangers can seldom be expected to understand why I can go for a hike one day and then be flat on my back for a week. Or can handle the hike, but a family BBQ will put me out of commission for a month because going up and down patio steps flared up my hip joints and now they won’t support me. Or that I can manage to injure myself swimming, usually by popping out a knee, ankle, or shoulder.
I educated myself about EDS through a consultation with a genetic specialist, and subsequent googling. Aside from that, I’ve unknowingly lived with it for a lifetime, with symptoms increasing in severity in my 20s and 30s. Although the diagnosis seemed looming–a condition that would never go away and may very well worsen with age–it was a relief to know that the crazy things that always happened to my body were explainable.
My two children have “rubber joints” that make me wince, just as my own used to worry my mom. I doubt she had ever heard of EDS, though I think she may have had it as well, but her intuition and experience with her own joints led her to warn me to be careful with mine. Thus I was deprived of ballet lessons as a child, and likewise kept out of gymnastics class. I begrudgingly saw the logic when I would twist, flop, and sprain several times a year, but unfortunately I also have a stubborn streak, and ballet has a seldom-acknowledged allure…
That’s where my story really begins.