A ‘chasm of misunderstanding and miscommunication’ is often experienced between clinicians and patients, leading to autoimmune diseases such as lupus and vasculitis being wrongly diagnosed as psychiatric or psychosomatic conditions, with a profound and lasting impact on patients, researchers have found. A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.

Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”

One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

  • FundMECFS@lemmy.blahaj.zoneOPEnglish
    221·
    3 months ago

    Glad this is getting studied. It took two years for my doctors to diagnose my Long COVID and ME/CFS.

    In those two years, I went from just feeling slightly ill to being completely bedridden. I wonder every day what my life would be like if my doctors had taken me seriously and therefore could have prevented worsening. Maybe I’d be able to leave my bed, my wife wouldn’t have left me, I wouldn’t be in poverty


    Instead I spent two years going from doctor to doctor being diagnosed with, “Anxiety”, “Burnout”, “Depression”, “Functional Disorder” etc. None of them were psychiatrists, I guess they just didnt know what was happening to me and wanted me to stop wasting their time.

  • Broadfern@lemmy.worldEnglish
    162·
    3 months ago

    Psychosomatic is the 21st century version of “hysterical.” It’s 100% bullshit. It is not a legitimate diagnosis but rather a term weaponized against patients.

    Using it should be grounds for license revocation, but society isn’t ready for that.

    • FundMECFS@lemmy.blahaj.zoneOPEnglish
      111·
      3 months ago

      Governments love it.

      Don’t have to pay disability benefits, bother with expensive treatments, or care too much if someone is disabled by a “psychosomatic illness”.

      It’s basically the perfect way for them to say: “Fuck off, It’s your fault, only you can do something about it”.

  • misk@sopuli.xyzEnglish
    14·
    3 months ago

    This hits hard. After dealing with rheumatologists for some time now I’m fairly certain they’re responsible for high levels of conspiratorial thinking among the older people. As you grow older you realise our understanding of medicine as a science is extremely narrow and shallow and therefore certainty with which doctors work is seen as being smug and reckless. God help you if you have a seronegative disease (which ultimately means there’s no known biomarker to test for).

    • FundMECFS@lemmy.blahaj.zoneOPEnglish
      151·
      3 months ago

      Yep. A lot of professionals are somehow convinced we’ve already discovered basically every disease possible, and that they know of every disease, therefore, it they can’t figure out what’s wrong with you, there must be nothing wrong with you. (Very flawed logic when you zoom out and look at the grand scheme of things, but when you’re an overworked professional on a tight schedule, I guess it’s just kind of how you were taught to do things and you don’t really question it).

    • inv3r5ion@lemmy.dbzer0.comEnglish
      3·
      3 months ago

      (which ultimately means there’s no knownbiomarker to test for).

      I had a relatively serious TBI as a teenager that wasn’t treated properly (long story) and when the symptoms from it became impossible to ignore as a young adult it was my fault for being lazy and there’s nothing wrong with me I just needed to try harder.

      That level of gaslighting makes me hate the medical industry.