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Psychiatric misdiagnosis of a medical condition

maria78 Member Posts: 1 Listener
Hi all,
I am doing a presentation about people with intellectual/developmental disabilities that are misdiagnosed as having a psychiatric illness that is actually a medical issue. The research is minimal when it relates to this specific population. I am looking for any personal stories of this happening. I'd love to know what symptoms or behaviors were exhibited, diagnosis given,  treatment and what the underlying medical issue was and how that was determined. I am trying to direct people (nurses in this case) to think outside the box and not get swept into the "oh it's a behavior again" mentality. Any help is greatly appreciated! Thanks!


  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I would guess that misdiagnosis is common even with physical problems let alone mental. As a rule 50% of doctors misdiagnose me as suffering crumbling spine even though I have never suffered it. It's caused by a lack of thinking and a complete lack of effort on the part of doctors who are becoming used to following scripts in diagnosis and treatment instead of using their brain and trying to understand the work they do properly.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • victoriafinney
    victoriafinney Member Posts: 22 Connected
    I have bipolar and ptsd. As a result I was told for six years that my joint pain was psychosomatic. It turned out to be very real. I have psoriatic arthropathy.the assumption that my pain was imaginary has led to irreversible damage. I am wheelchair bound.
    This issue has quite literally destroyed my life. sue or not to sue?
  • Waylay
    Waylay Member Posts: 971 Pioneering
    Think suing would help? Have you spoken with a solicitor about it? Do you want money to help you live/survive/get treatment, or emotional closure, or both?

    I totally hear you. The physical damage done while they refused to listen to you can't be fixed. Same for me. But I found that the psychological damage was even worse.

    In ~1995, at the age of 20, I started feeling sick. Had tons of tests, but none came back positive. Instead of thinking, "Hmm, this woman has something odd going on - let's keep looking", the response was, "It's all in your head, we're sending you to psychological services." Over the next two years I suffered through fevers and other flu-like symptoms such as body aches, fatigue, headaches, weakness. These symptoms kept getting worse, but when I went back to the docs every so often, they just sent me back to the psychs. The psychs assumed, without even talking to me about it, that all my symptoms were psychological. After about 9 months I was having such severe fatigue that I had to travel to uni, take a nap, go to class, take a nap, travel home, and go to bed, I was so exhausted. I began having cognitive symptoms, such as confusion, short-term memory issues, etc., but this was just stress, according to the psych. At about a year, I manifested arthritis (a hugely swollen knee, red, hot, very painful), but it was just a sprain (ahem), and then it was diagnosed as a continuation of my childhood arthritis. I kept asking the psych how it related to my emotional problems, but she refused to comment.

    I had needle aspirations, a variety of lovely steroid treatments, tons of meds, and had to retroactively take a semester off from uni. While I was away for the summer I had an unneeded knee surgery (surgeon thought my knee was cartilage damage).

    By the time I got back to uni in the autumn, I was extremely ill. I had all the previous symptoms, as well as a chronic severe headache and awful back pain (meningitis). The docs still sent me back to psych services. It took several attacks of acute amnesia, which turned out to be Transient Ischemic Attacks (mini-strokes) before they started to take me seriously. I actually cried with joy when told I'd had mini-strokes, because I knew that they couldn't ignore those.

    A chance appointment with a rheumatologist who happened to be a professor of emerging infectious diseases finally sorted things out. I had Lyme Disease, and after almost 2 years of being told it was all in my head, it had gotten into my joints (Lyme Arthritis), my central nervous system (the back ache, etc.), and my brain (Lyme meningitis). At the time, I lived less than 100 miles from Old Lyme, CT, where Lyme Disease was first recognized. Months of IV antibiotics got rid of it, but I've never been the same.

    The worst part of it, though, was the constant "it's all psychological" thing. I was young, not very sophisticated, and all the people I was dealing with were older male doctors. I was sure I was sick, and I was worried, and when they told me it was all in my head it was both terrifying (being abandoned!) and humiliating (hold on, I have mental health problems, but that's a bit too far!). Even my friends and family assumed that it was all psychological, and thus weren't very supportive. They kept pushing me to act normally, when I felt awful.

    At times I even began to believe that it was psychological. After all, all these knowledgeable people were telling me so... Then I hated myself for making me so sick, wondered what the Hell was wrong with me that I'd make myself suffer like this, miss semesters of uni, miss months-years of time with friends, lose my partner... I was incredibly harsh on myself.

    At other times I flipped back and KNEW that I was really sick, and I felt SO ANGRY, so desperate, and so scared.... I had something really bad, which nobody could diagnose. It was getting worse and nobody would listen to me or help me. What was going to happen? Would it kill me?

    I've only recently realised how much trauma I carry from that 2-year experience. Having everyone around you doubt the very basics of your reality....

    People said I should sue, but I just wanted to put it behind me as quickly as possible. I should have, though.

    I hear you. I hope you're healing, and that you make the right decision for you. Sorry for the novel.

  • Waylay
    Waylay Member Posts: 971 Pioneering
    Oh, and I was diagnosed with major depressive disorder and generalized anxiety disorder at the time, both of which got much worse throughout the 2 years.


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