My rheumatologist misdiagnosed me with fibromyalgia when I was 10 and then told my family that they needed to ignore me when I was exhibiting “pain behaviors.” My neurologist dislocated my shoulder when she was examining me and she asked if that happened often, sent me to a geneticist and said it’s a far stretch but she had a patient like me decades ago and might be the answer to my issues. I had never heard of EDS before, but 6 months later I was diagnosed by a geneticist.

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for me personally, the main difference it made was it made my mom stop gaslighting me and start actually trying to help a little. it can be useful for getting referrals to certain doctors and stuff but i’ve also been turned away from a doctor for the diagnosis 🙃

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