Does anyone else feel like they’re constantly disappointing people by not getting better? I feel like I’m failing because people keep saying they “know” I’ll get better, even though I explain to them that it’s a genetic condition. I don’t want people to be sad or worry about me, but the toxic positivity hurts too. The reality is that I will be sick my entire life, and I just need people to accept that with me

Ehlers-Danlos Syndrome (EDS)

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  • Gingerbunny26


    Uuuuggghhhh YES!!! Going thru this myself now. I'm just straight up furious about some things at this point. I'm glad to know I'm not alone but im sorry you're going thru it too.

  • LeeannD


    100% I make strives to make my self healthy as possible and I'm so happy with where I am at. I live a life I am proud of but I feel like everyone else is disappointed in that. Sorry you can relate

  • royalty


    THIS!!! Toxic positivity helps no one and that's all I get from my bf's family. It's so exhausting because no matter how many times I explain that this is a lifelong condition and there is no "cure" no one ever believes me

  • sstorm


    I just had to tell my husband not to "encourage" me to constantly go to the doctor. To stop telling me things like "maybe you should call the doctor", "if you went to the doctor...", etc. I know my nuances bother him cuz he can't fix it, but the guilt I feel is overwhelming for me, which in turn causes an anxiety attack. I guess I should of prefaced with I just received another set of normal labs. Normal labs = more questions (ALWAYS)

  • 3x3


    I try to reinforce that I'm not /sick/ because I can't get better. I'm disordered/disabled. There is no treatment that could cure me, and there's no disease to fight or pathogen to battle. The collagen in my body is very slightly weakened, and because the body is so complicated, it causes a domino effect everywhere else. Sometimes we can prevent or help a certain problem, sometimes there's nothing we can do. Regardless, there's no way to fix the collagen I currently have, nor would that undo a lifetime of having weak collagen. My body is different, and medical treatments aren't there to fix me - they're there to treat problems as they come up. Also effective is to tell them to f*ck off 🤗

  • MJ17


    YES! YES! all the time my family is telling me I’ll get better soon or in the future or whatever and it sucks because it was hard enough to accept my diagnoses myself. People need to understand that we are permanently sick, and disabled. We will not get better and those empty platitudes only make things worse

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