I wasn’t even told I had a diagnosis

Posted March 26, 2021

I was diagnosed when I was 17. After three weeks in hospital for chronic pain in my sacroiliac joint (which left me unable to walk, wash my hair, or even go to the toilet by myself), a medical student asked me, “you have Ehlers-Danlos syndrome, right?’ I’d never heard of it.

A week later, I received a letter referring me to a specialist, which discussed my medical background. The first line said I was diagnosed with Ehlers-Danlos syndrome (classical type) at age 12. After years of seeing rheumatologists, occupational therapists, physiotherapists, and pediatricians, they hadn’t even bothered to tell me that I had a diagnosis.

Since then, I’ve received so much gaslighting from doctors, nurses, fellow students, teachers, and even family members, that my own brain starts to gaslight me too. Sometimes I think I’m crazy, that I must be faking it. But the pain that EDS puts me through is real, even if the scattered and random symptoms seem so unexplainable that they must be fake, I know what I’m going through is real.

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