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Saturnalia

801d

Hello, I was recently diagnosed with HEDS and wanted to find others who suffered “invisibly” as well! My partner of 7 years rejects my diagnosis due to the rarity of it in the clinical medical field, while my mother (who also was diagnosed with HEDS this year) has let her diagnosis consume her and spends most of her time preventing a “flare-up.” Does anyone else have a foot in two world with Ehlers?

Top reply
    • TreePerson

      800d

      Cut out the people who don’t believe you is my advice.

    • Margot

      799d

      Of course! Thank you. I wish you all the luck. My mom used to be a nurse so I understand getting all consumed with the medical side of things too, and that can be a lot. Remind your mom to do something spontaneous every now and then. Chronic illness makes that so hard, because it feels like something bad will happen, but it’s important!

    • Saturnalia

      799d

      @Margot, thank you so much for your perspective. I appreciate your understanding and your time in explaining your experience, and I feel comforted knowing someone else out there has felt what I have. Congratulations on your strength and bravery in leaving those behind who did not help you cultivate your energy with this diagnosis, and I wish you the best as we all try to manage with this crazy eds life!

    • Margot

      799d

      My ex boyfriend was also someone who had a very hard time with my conditions, and I had been with him for 9 years when I was in the beginning stages of trying to get diagnosed, so I ended up trying to pretend I was ok or convince him I was really sick and it was exhausting. At the end of the day, I I literally do not have the energy anymore for people that don’t believe me (my energy levels are not what they used to be). There has been a lot of loss with that, because I have left relationships and lost friends, but I have also found out who I can be real with and close to and I have found the most amazing, understanding and kind people in letting go of others. I’m not saying to leave your relationship, but definitely try to take care of yourself and learn what works for you. There isn’t one way to do this, and you don’t have to be like your mom if you don’t want to manage that way. I don’t have it figured out either, but I know the less stress I have and the better support I have, the better I do.

    • Bijoux_bean22

      799d

      Yep, also the ones who are too invested and act like you can’t possibly do anything yourself. My ex was like that.

    • Messymexi

      800d

      People that don't believe you have no weight on your life. I cut them out of my life cause they hurt me too much. It's hard but it's right thing to do

    • TreePerson

      800d

      Cut out the people who don’t believe you is my advice.

    • yonaistrash

      801d

      I’m in the world of denial where my parents don’t believe in it and my doctors aren’t helping me properly. My friends are supportive about it, however. It feels like I’m stuck in an ableist world where I don’t have permission to be chronically ill

☝ 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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