The story of Scarlett
It started in my back, and at first I thought that I’d just slept weird or hurt myself at cheer practice. By the time the pain began to spread, I had already been passed between pediatricians, chiropractors, and physical therapists. I saw MDs, DOs, pain specialists, orthopedic surgeons, and rheumatologists. No one had any idea why the pain was slowly creeping its way across every inch of my 13-year-old body.
At best, the doctors simply told me there was nothing they could do for me. At worst, I was called attention-seeking, drug-seeking, and mentally ill.
After spending four years searching for a diagnosis, and eventually giving up hope of finding answers, I was referred to a new physical therapist. Upon first evaluation, she recognized my symptoms of Ehlers-Danlos Syndrome. She asked me if I was flexible and said, “I want you to look this up,” as she scribbled three capital letters across a bright pink sticky note.
I’m not sure if it was the eagerness in my eyes, or in my voice, or in the way that I grasped that flimsy piece of paper that held the closest thing I’d ever had to a diagnosis, but I knew that she could sense it: the unexpected spark she had ignited in a previously dwindling fire. Hope.
“I hope you don’t have EDS,” she said. “It’s not a good thing. But I want you to look it up and see if it matches your symptoms.”
When I got home from physical therapy that day I rushed to my computer. I still remember how surreal it felt to read about my condition, but, for the first time, with a name.