My journey with my chronic illness has been tumultuous & complicated. "Fighting to get a diagnosis for Elhers Danlos Syndrome in the first place was incredibly difficult, and finding adequate treatment with knowledgeable professionals has proven to be even harder. Because of my condition I was forced to go on a hiatus from my beloved burlesque career in order to relocate to a state in which care was available. Awareness is important to me because I've had far too many medical professionals invalidate, question, and gawk at the very words"Elhers Danlos Syndrome". One Doctor even had the audacity to ask me to fill them on it entirely upon first meeting, and chose to not educate themselves despite allegedly having several patients with this illness. With awareness amongst the public AND the medical community, hopefully people won't have to go to such lengths just to get adequate healthcare, as I did. This necklace symbolizes a beauty that I have, the beautiful trait of strength despite constant, lifelong pain. I know I can return to the stage one day and pick up my passion for burlesque again, but for now I'll must allow myself to get well." @femme.fatigue
5 comments
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