What I Find Most Embarrassing About Ehlers-Danlos Syndrome

The physical symptoms of Ehlers-Danlos syndrome (EDS) encompass a wide-ranging list. The frustrations of comorbidities and physical limitations leave countless emotions at war with one another. Even when I’m not thinking about it outwardly, I’m still mulling things in the back of my mind—trying to fit the puzzle pieces of my life together.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

For me, the diagnosis shed light on my tendency towards, for lack of a better word, clumsiness. But it’s not run-of-the-mill klutzy. It’s not that I don’t pay attention, am too rushed and careless, or any other accusation lobbed my way in years past.

Everyone’s an expert, right?

I wake up some days and drop half a dozen things within the first hour. In the last few weeks, I slipped on the stairs and barely caught myself in time, I fell and hurt my leg on the corner of a hope chest, I blistered myself when I splashed boiling water, I cut my finger washing a knife, and I fell out of a hammock. I’ve dropped a hundred things, tripped countless times, choked on my own spit a few dozen times, ran into unforgiving objects, and today I dumped part of my husband’s dinner on the floor. Swoop…there it went. Oh, and on instinct I tried to catch it between my leg and the counter—score one for another burn… on the same leg I’ve deeply bruised twice recently.

What bothers me the most isn’t the physical pain from the clumsiness, it’s the embarrassment. As a fiercely independent person, I’m being told I have to be patient with myself and learn to ask for help—I’m not wired like that. I have to exchange decades of “I can do it all myself” for “Can you help with this?”

Learning to swallow my dignity is no small feat. Where is the line between being smart vs. what whispers to me that I’m admitting defeat?

I still feel like I can do all the things I’m told I should not do.

Ehlers-Danlos syndrome is often a lonely journey. People tell you they’re always willing to listen, but who wants to share a myriad of jumbled thoughts and feelings only to hear, “Oh, that’s nothing. I’ve done that way worse.” Or “Oh, that injury isn’t bad at all. You should’ve seen it when I…” *sigh* I get it. Yes, we all hurt ourselves, and chances are you can one up me in many ways.

But it’s not a competition.

It’s hard enough for me to open up and share—I’m more of a listener anyway—but please don’t minimize my feelings when I finally do. I often manage to cram years worth of mishaps into a few short weeks…or days. The cherry on top? I heal slowly too, so those minor things linger and pile onto one another. EDS may often fit into the invisible illness category, but the scrapes and bruises are more than me being klutzy.

Most try to be understanding, but I see the irritation and impatience slip through from time to time. I laugh it off most of the time, but some moments slip through the cracks and leave me feeling vulnerable and stupid.

I’m only human, and those feelings reflect that.

I’m doing my best to learn a new “normal,” be cautious, but still hold onto my independence. I won’t do things right every time..maybe not even half. OK, let’s face it…some days maybe not at all.

So when I say oops or ouch for the 12th time that day, try not to be too exasperated. When I’m cleaning up yet another mess or trying to laugh it off awkwardly as I nurse yet another wound, know I am not intentionally being careless. Trust me, any frustration you feel is magnified in me and coupled with embarrassment.

I’m doing my best, and for today that is enough.