My chronic pain conditions are fibromyalgia and early-onset osteoarthritis due to a genetic connective tissue disease called Ehlers-Danlos Sydrome (EDS). I am mostly bed bound with knees that are bone on bone. I can’t use my arms above shoulder level and my joints are in constant pain. The fibro started over 25 years ago, and it was only after decades of being told it was all in my head, that I was diagnosed with FMS by a female rheumatologist who said, “You’ve got the biggest whopper of a case of fibromyalgia I’ve ever seen in two decades of practice.”
We had thought the OA was due to my weight, but many of us in my mother’s family have since been diagnosed with EDS, which is an autosomal dominant genetic disease, meaning that we have a 50% chance of being born with it. Interestingly, many families of contortionists have EDS, which most often manifests with loose joints (hypermobility). My grandfather actually was a contortionist in Vaudeville when a young man.
I can’t begin to tell you how many doctors, practically all of them male, trivialized my pain, ignored my symptoms because they couldn’t find evidence in tests, and eventually told me it was all in my head, in spite of reports from psychiatrists that I was not malingering or neurotic and was in fact well-adjusted. When I was finally diagnosed, I found myself in a state of euphoria and relief, vindicated as it were, from decades of implied hypochondria.
I truly believe that there is a gender bias involved, though I have also met men who went through the same thing as I. Far more women than men are ignored or misdiagnosed, and usually over a period of years, not months. Women in pain are not the only women who fall under this gender bias. Women present with different symptoms of heart attack than men, and only in the last decade has this become common knowledge among doctors and victims alike. It’s time to insist that the similar gender bias with women in pain be changed.