Posted June 20, 2018

by Kate S.

Having an Ehlers-Danlos syndrome (EDS) often feels overwhelmingly negative. It’s a disease most people haven’t heard of nor do they understand it; diagnosis is complicated and can take years; treatment is minimal at best and invasive at worst. Symptoms range from benign to life-threatening, often in the same person, and often in a short period of time. Doctors rarely know how to pronounce or spell the condition, let alone treat it. However, with the negative aspects of EDS come some counterintuitive lessons. This little genetic anomaly provides a lot of the guidance I need to live with EDS.

Be flexible
As a child with flat feet, dance class was the last place I should have been. However, my dance teacher loved me because of my flexibility. I could slide down into the splits without realizing anyone else struggled. I could stretch and contort my legs in more complex pretzels than anyone else in my classes. As I’ve gotten older, the flexibility has turned into instability. Joints that did me favors by being loose when I was younger are now unable to stay where they belong and are a detriment to my well-being.

However, one of the greatest lessons EDS has taught me is to be flexible. EDS is unpredictable–pain flares when I least expect it, injuries occur in the most benign situations, symptoms appear out of nowhere. I laugh when I think about how I used to live my life by my color-coded planner. Now, I know my physical and mental well-being can change in a moment, and I need to honor that. I might need to change or cancel plans, make a different meal than I intended, take leave from work to have surgery, or change my lifestyle completely. The only way to survive these frustrating and sometimes devastating events is to continue to be flexible and adapt to my circumstance.

It’s okay to have thin skin
When I was diagnosed in with EDS in 1990, all I was told that I had “thin skin” and would experience frequent skin tearing and bruising. Since then, I’ve learned more about EDS, and while the symptoms are many and varied, “thin skin” is the trait that I most identify with.

I’ve been told my entire life that I’m too emotionally reactive, I take things too seriously, and my ‘skin is too thin.’ “Literally!” I reply. My physical thin skin has caused a lot of trouble in my life–from cuts and bruises to scars and stitches–and I wish I had skin that wouldn’t break so easily. Similarly, I wish my emotional thin skin were stronger. Many people have told me I need to toughen up or not wear my heart on my sleeve. But what some people identify as a weakness is one of my greatest strengths. My ability to feel emotions intensely increases my empathy for those around me, and my ability to care deeply makes me a more committed coworker and friend. So, not only am I okay with my thin skin—I take pride in it.

Brace yourself
My knee surgeon just ordered my fourth custom-made knee brace. I have a large basket that holds all of my knee braces, immobilizers, post-surgical shoes, and other assistive equipment. I have more wrist braces than I have time to wear. I have two pairs of crutches, a walker, and a wheelchair. And I hate all of it. Braces are heavy, cumbersome, uncomfortable, and warm. Wrist braces interfere with what I need to do, whether it’s typing or tying my shoes. And crutches are just a big sign that screams something is wrong. However, going without these assistive devices means I’ll be spending a number of days in pain after. So, as much as I hate them, I use them.

A common refrain I hear from people—with and without chronic illness—is how much they hate asking for help. But like me, when I refuse to use my braces and crutches, trying to “go it alone” without the support of those who care about me makes the road immeasurably harder to travel. EDS is a difficult burden to bear, so I brace myself with friends, family, self-care, good doctors, support groups, and other things because even though it might be difficult to ask for the help, I know it’s good for me and will make my journey a lot easier.

No one with EDS will ever tell you it’s an easy condition to live with. However, it’s taught me a lot, not only about how to deal with a body that is highly irregular but with the life that comes along with an EDS diagnosis. By being flexible, honoring my thin skin, and bracing myself, I can navigate through life with EDS a little easier


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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