Making Peace With My Ehlers-Danlos Syndrome Diagnosis
Bodies remember trauma.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
Every Father’s Day since 2016, I have a flare up.
Father’s Day Sunday three years ago, I was standing in church singing, and I felt an unusual pain in my right shoulder that extended up, weaving through my ribs, up into my neck and radiating up the side of my head. The pain grew so intense I collapsed to my seat and had to be helped out of the service. From that point on, my life has been irrevocably changed.
I have sat in countless urgent cares and ERs being invalidated by doctors and nurses telling me my pain isn’t real or that I was experiencing it because “well, sweetie, you’re a woman preparing to have children one day” and “maybe you just need a psychiatrist.” The emotional trauma morphed into panic attacks facilitated by my adrenal gland working overtime to keep up with the pain, and the seemingly daily invalidation I faced by people I thought knew and loved me, as well as medical professionals who treated me as having lesser importance.
I used and wore a brace for months on nearly every joint, and experienced agonizing joint pain each time I chose to take a step, pushing me eventually into crutches and inevitably into ambulatory wheelchair use for nearly a year and a half.
It is only through determination and relentless pursuit by myself and my parents that we found a doctor who would treat my symptoms and was willing to actually listen. That led me to a diagnosis of Ehlers-Danlos syndrome, Type 3.
There is no cure for EDS; only pain management and treatment of my comorbid symptoms like POTS and anxiety disorder make it livable. Frankly, I still don’t know the internal ramifications of my illness, except that as of now, my diaphragm and lungs are hypermobile.
Since that day, I have sought to find some kind of peace with God through the daily frustrations of living with this kind of medical condition. It’s not easy; I’ll probably always wrestle with it alongside grieving the activities and relationships I lost along the way. I walked away from my chair in the county orchestra as second violin, from pursuing my black belt in Taekwondo, and from any semblance of a “normal” life without constant pain.
Will I return to my wheelchair? Totally possible. Will I utilize braces, compression shirts, pants and socks? Yes. Will I continue to live my life in face of whatever transpires in the future? Absolutely.
My body and I just don’t see eye to eye on things, and it gets the upper hand often, requiring me to listen to it scream the soundtrack to my life. But I walked most of San Francisco and Disneyland using only braces a few months after getting out of my chair. I walked most of Panama City and the areas around it on my study abroad trip last year. I could start playing my instruments again for both enjoyment and pay. I was able to consistently practice longsword form last year. I hiked around San Jose just weeks ago, putting in 31 miles of steps.
Every chronic illness warrior has a story. Each of us has something to bring to the table, to share our experience and have the chance at giving someone who is still undiagnosed some semblance of hope.
It’s a daily war — but sometimes I get to win the day.
(He/They) 26 yr old nonbinary lesbian rocking Ehlers-Danlos Syndrome, Type 3 & 6 as a journalist. Anxiety/OCD/PTSD warrior. Cat dad, bartending and baking enthusiast.
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