• FundMECFSResearch@lemmy.blahaj.zone
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    8 days ago

    Yeah. Stop pretending the healthcare system has the resources to deal with unknown diseases.

    If they can’t find a diagnosis, you’ll get told that you’re probably anxious or depressed, or malingering, and get told to exercise and eat healthy. This is what I was told when I was literally bedridden for a year by an undiagnosed neurological disease.

    It’s a pretty horrible position to be in. My disease which is relatively common but not taught in most med schools took me three years and 23 doctors before I got diagnosed, even though diagnosis is based on fairly simple clinical observations.

    • brbposting@sh.itjust.works
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      8 days ago

      Oh wow

      Awful and I can even try beginning to imagine the kinds of things patients affected might be told by doctors… (“I get tired too, …, get more sleep before your next appointment”)

      Wishing the best for you and the community

      • boonhet@lemm.ee
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        7 days ago

        I ha the the fact that the first half of it sounded exactly like me

        However, as soon as it got to the hallmark symptom, I felt pretty lucky. I don’t have any sort of post-exertional crash or anything. I’ll be a bit tired but feel good

    • Obinice@lemmy.world
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      8 days ago

      the healthcare system

      Kinda sounds like you’re refering to a particular country’s healthcare system (whilst assuming OP meant this same one), but you didn’t specify.

      You could be talking about Brazil, Kenya, New Zealand, even France. Without that bit of info, it’s hard to learn much from what you’re sharing.

      Anyway, bloody awful what happened to you, madness! I hope once you got your diagnosis that things improved, and that you’re doing grand these days :-)

      • FundMECFSResearch@lemmy.blahaj.zone
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        8 days ago

        Having worked for advocacy groups for my disease, this is literally a universal issue and affects even the best systems. The only cases where this tends not to be an issue are extremely expensive private doctors who take all the time in the world to investigate for you.