• mecfs@lemmy.worldOP
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      4 months ago

      ME/CFS has a 5% recovery rate. I am as severe as Diana for a decade for example.

      Please don’t say things like that. It insinuates that our lives are not worth living, when that choice is very personal, and having someone else say that can be very heartbreaking when you’re just living the best you can.

      Imagine you are ill with something and someone says “you should probably go kill yourself” or “If I were in your shoes I would kill myself”….

      • Ghostalmedia@lemmy.worldM
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        4 months ago

        Apologies for the jerks in this thread. I’m yanking those comments now since that behavior is against community rules.

        As the downvotes indicate, these people are not a representation of the rest of this community’s views.

        • mecfs@lemmy.worldOP
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          4 months ago
          1. You won’t really know until you reach those circumstances. If you had told me before I was disabled that I would be in severe pain bedridden, unable to speak and tubefed, I would have said I’d prefer to die (but part of that is thinking this would never happen to me). Now I prefer to live my limited life, and I would never give it away.

          2. I’m not denying some people would, I’m just saying its not something you should tell people with the illness.

          3. and killing yourself is a lot harder than it seems when you’re disabled, unless you have a firearm

    • jol@discuss.tchncs.de
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      4 months ago

      People seem to slowly get better, and there are still medical trials going on for different medicine that has varying levels of effect. A friend was on a trial for a sort of heart disease medicine that has graduated to the next phase.

      I can’t imagine the stress on both their lives, specially in a country with terrible healthcare like America.

      • douglasg14b@lemmy.world
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        4 months ago

        I can’t imagine the stress on both their lives, specially in a country with terrible healthcare like America.

        Should be a slogan.