Living with Ehlers-Danlos Syndrome

When your disability is often invisible, it can be hard to claim your identity

4 minute read
Daralyse, a smiling woman with light brown skin, in an athletic yoga pose, balanced on her arms with legs held up to one side
Being flexible and athletic doesn’t mean you can’t also be living with a disability: Daralyse enjoys yoga when her symptoms allow. (Photo courtesy of the author.)

In 2012, my colon shut down. For five weeks, I couldn’t (to use a euphemism) “go to the bathroom.” After eight colonoscopy preps and a week at Jefferson Memorial Hospital, I was finally released with my colon intact and relatively functional. At the time, I felt two things: lucky not to have needed surgical removal of my colon, and unlucky to have been diagnosed with an “incurable” medical condition.

I was 29 in 2012, and the diagnosis helped me to make sense of my lifelong experience: knowing I am a person with Ehlers-Danlos Syndrome (EDS) made visible an invisible element of my identity. In case you haven’t heard of it (which you likely haven’t because EDS is rare, affecting only one in every 3,000 people), EDS describes a group of inherited connective tissue disorders caused by abnormalities in the structure, production, and/or processing of collagen.

Although the diagnosis explained physical phenomena that had been occurring since childhood, I’d never seen any of the symptoms as problematic until my colon called it quits. In fact, I’d always seen my “bendiness" as an asset. I could maneuver my thumbs all the way back to touch my wrists, do splits on command, and touch my nose to my knees in a forward fold. I was the star pupil in every yoga class and a Division II athlete, affectionally referred to by family and friends as “human Gumby.” It never occurred to me that flexibility could have any downsides.

“I have EDS, too”

Since my release from the hospital in 2012, and even before that time, I’ve been unapologetic about owning most aspects of my identity and experiences. I’ve spoken publicly about my race and sexuality, but I’ve never come out as a person who lives with a chronic medical condition. Most of my closest friends don’t know. It was only recently, during an interview with Elizabeth Smith, a student and a disability advocate, who is open about living with a disability, that I told her, a stranger, “I have Ehlers-Danlos Syndrome, and I don’t talk about it because my needs and my symptoms are intermittent, and I don’t know how to navigate that. So, I pretty much keep my EDS a secret.”

Smith's response, “I have EDS, too,” shifted something inside me. Less than one percent of the population lives with EDS and something about being on the other side of a Zoom screen with someone who could relate to my exact condition gave me the courage to claim this invisible-to-others element of my identity.

As a journalist, I’ve spent the last five years of my life speaking to others about the identities and intersectionalities that give shape and substance to their lives. And I thought of myself as a transparent person, but I started to feel an incongruity between being a person who seemingly lets it all hang out there and keeping this incredibly important part of my identity a secret.

In fact, there are weeks of my life when I don’t consciously think about my biraciality or my bisexuality, but everyday I think about EDS. Is today going to be a high-symptom day? A low-symptom day? Will I be able to get through it without any modifications or accommodations? Can I even say yes to this opportunity?

A life-changing decision

While individuals who live with EDS will have their own unique experiences, for me, the syndrome comes with a host of symptoms from bowel irregularities to motility issues to painful menstruation, anemia, and even depression and anxiety. I can even see that EDS played a factor in my developing anorexia and bulimia in my teens. But, because its expression has been erratic, I haven’t embraced EDS as an aspect of my identity. I’ve tried to manage and control it, to suppress and deny it. I’ve concealed both the diagnosis and the symptoms out of shame, insecurity, and the complexity of living with a condition that expresses itself differently at different times.

But, after speaking with Smith, I came to an important, life-changing revelation. I realized that I first became aware of my EDS when a part of me shut down, and I made a decision in that moment. I refuse to shut myself down. I claim my Ehlers-Danlos Syndrome, the way I’ve claimed so many other elements of my identity and experience. So, here I am, Daralyse Lyons, a biracial, bisexual woman who not only lives with EDS, but is learning to embrace it.

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