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LoisPain

748d

Has anyone else with EDS ever had issues with Drs refusing to treat them because they feel they don't know enough about EDS and feel that they don't want the liability of possibly treating you incorrectly and doing more harm than good?

Top reply
    • Zebramom5

      739d

      🙌

    • Zebramom5

      739d

      🙌

    • Pixxy

      743d

      Lol yasssss I mean I sort of think that it's just too much for most Dr's honestly.

    • PolkaDot77

      747d

      That sounds really frustrating! I haven't had anyone refuse to treat me (yet), but I did find an Ehlers Danlos specialist to add to my team and that made my entire treatment picture a lot easier. I had to drive a long way (500ish miles) for the initial appointment, but they've been willing to do virtual appointments after that and been super helpful. It's made treating both my related and unrelated conditions a lot easier because my primary is able to focus on the unrelated issues. Doctors may not have specifically studied Ehlers Danlos in school, but they should be willing to do research to get an idea of it. If they're not willing to do that I would run the other direction.

      • PolkaDot77

        747d

        @PolkaDot77 Or rather hobble the other direction carefully so my hips don't slide out again. 😅

    • Sullivan

      748d

      doctors often don’t go into specific conditions like EDS but rather how broad issues like connective tissue disorders appear in patients. I would suggest finding friends or groups with chronic illness for support. especially with how expensive specialists are at the moment.

      • LoisPain

        747d

        @Sullivan Yes. I agree for general emotional support and relatability, friends and support groups are ideal. However what I was referring to in my question was in general was going to see a doctor for a generalized health issue, NOT RELATED TO EDS, but simply because I have a EDS diagnosis a physician refusing to treat and referring me to someone else because they don't want to treat me simply because they worry about complications due to slow healing or other complications due to the pre-existence of EDS and their lack of knowledge about the condition even when it is unrelated.

    • SheaShea

      748d

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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