The story of Dawn
I never knew life without pain. It was my normal and it was the normal of all my adult family members. Growing up, I accepted life was inherently painful. I learned to live with in whatever way I could.
Eventually as I entered adulthood, the pain got worse. The multisystemic symptoms started and as time went on my system would flare and flail off and on, landing me in the hospital more times than any “healthy” person should ever be hospitalized. Still, things would calm down, the doctors would say I was fixed and I believed it. I went on trying to keep up with my family, life and career but the sick was always with me, just not always definable by the usual battery of tests.
One fateful night, a 300 pound patient fell on me, twisting up my back and hip in a whiplash like fashion. The weeks went by with physical therapy almost making me worse and the corporate health practitioners commenting on how flexible I am and how my healing was slow. Eventually, they said my problems were due to an “underlying connective tissue disease” and as my health declined over the next six months I would desperately try to find a physician to figure things out with harrowing and disheartening experiences leaving a mark but it didn’t stop my momentum.
Less than a year later, my primary diagnosed me with Ehlers-Danlos Syndrome and Dysautonomia. He said “You’re a medical enigma!” With a little more work I made it to genetics and got my official Zebra stamp of approval with Vascular Type Ehlers-Danlos Syndrome. After more than fifteen years of advocating for myself and a lifetime of illness, I finally have a reason for all my whack-a-mole problems. While I always knew it wasn’t “all in my head,” now the practitioners I meet with will know to. All the pain, gaslighting, neglect, and ableism is worth it if sharing my story might help another Medical Zebra find their way to diagnosis. Just because it is “rare” doesn’t mean it isn’t real!