My diagnosis took 6.5 years(/33 years). I am certain that I would still be undiagnosed if I hadn't figured it out myself and compiled a 140-page report for my specialist that included medical and family history, imaging and photos, diagnostic criteria, and journal articles.
I slipped two chocolate bars into the envelope with my report (because it was a lot of reading and I'm not a monster) and dropped it off with her administrative assistant. At our next appointment, the first words out of her mouth were, "well, I'm convinced."
Sorry but no one should have to "convince" a doctor of their diagnosis! Doctors, diagnosing patients is part of your job.
Moreover, patients shouldn't have to have grad school training and write a mini-thesis in order to get doctors to listen to us. For several months, I set my degree aside so I could do the necessary research and write up the report that finally got me taken seriously.
My doctor also told me at that appointment that I now knew more about EDS than probably any other medical professional who would ever treat me. She meant it as a compliment. It was a terrifying thing for a newly diagnosed person to hear.
(She proved her point by refusing to learn anything about EDS while I was still seeing her. She also refused to let me take the lead in the absence of any direction from her. Again, doctors, learning about and treating your patients' conditions is also your job.)
Also a reminder that Eurordis found that women wait an average of 16 years for an #EDS diagnosis. Men wait just 4 years.
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