Posted July 30, 2018

by Emily N.

I’m a 36-year-old woman. I live in Detroit but work as an Associate Professor in Ann Arbor. My Ehlers-Danlos awakening came last year, two years after my diagnosis with Postural Orthostatic Tachycardia Syndrome (POTS). The last three years are a bit of a doctor appointment, HR, and mystery diagnosis blur.

As a child, around the age of 7 or 8, I already demonstrated symptoms related to my undiagnosed EDS/POTS. I sat on the floor when possible, compressing legs in order to think clearly. Due to painful subluxations, my father would walk on my back or “pop” things back in place (don’t try this one at home). It seemed I was always in some sort of brace, on crutches, or in a cast. Teachers would make me speak with school counselors to explain my bruises and regular injuries. I’d barely started this long journey of being misunderstood, mislabeled, misjudged.

I can see how I never knew. My recent diagnoses have led my mother to pursue diagnostic labels from physicians and other practitioners. She has gone her whole life dealing with the aftermath of an uninformed medical care workforce: 14 back surgeries, a busted morphine pump, countless car accidents, and an oxygen tank later. She was the hardest working mom out of any moms I knew, but nobody understood why she felt so bad. Hypochondria? Munchausen’s?

Pain, bendiness, dizziness, inability to shower; all of those traits were summed up by adults as “moody”, “whiny”, and “lazy”; words that are now directed toward me by those who wrongly judge this book by its cover.

I am not moody. I chase toward hope and run away from depression. I am not whiny. Going through life, let alone thriving, while your brain and body are in a state of fight-or-flight due to prolonged pain is not whiny. It’s badass. I am not lazy. Despite all these challenges, I pursue life, I summon the strength, I fight another day. I am #ZebraStrong.


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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