Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]

I started my diagnosis journey at 23 and finally got answers when I was 26; almost three full years of being in and out of doctors and test after test, appointment after appointment. For many people, this process can take even longer, for similar reasons to mine taking so long; doctors who either did not know about EDS, had prejudices about what EDS should be or look like, or just lacked any patience or understanding at all and wouldn't listen. This experience is not isolated to me or to people with Ehlers-Danlos Syndrome.

People on year long diagnosis journeys perform unacknowledged physical and emotional labor in order to find answers and seek treatment and appropriate medical care. When someone tells you they are "undiagnosed" DO NOT think "hypochondriac", fight your own prejudices. Diagnosis can take an extremely long time but that does not mean that they are not truly ill.

*Spelling correction to video: plantar fascitis

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Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer Latinx disabled woman and uses she and they pronouns.