Misdiagnosis? Schizophrenia? Emperor’s new clothes?

Is talking about being misdiagnosed with schizophrenia like trying to sew sequins on the Emperor’s new clothes?

As regular readers of my blog might know, in my teens I was diagnosed and treated for ‘chronic schizophrenia’ on the basis of so-called negative symptoms, such as social withdrawal, flattened emotions and lack of interest in things. The situational reasons for these were not taken into account during five years of treatment; neither life events nor the greatly worsening of these so-called ‘symptoms’ by medication. I’ve been fine since I managed to get myself off the neuroleptic drugs and out of the psychiatric system many years ago.

Nowadays people (including my publishers, psychiatrists and others who have read my memoir and those who know me) say that I was misdiagnosed with schizophrenia.  Although I sometimes say this, too, I’m becoming increasingly uncomfortable with the way it seems to imply that there is an illness called schizophrenia and that others suffer from it.  I do believe that I never did have ‘schizophrenia’ – but does anyone? Is there such a disease?

Saying I was misdiagnosed also enables psychiatrists to concede that there are incompetent practitioners while they point out that doesn’t mean there is something wrong with psychiatry as a whole or that what happened to me would still happen to someone today. For example, click here to see review of The Dark Threads by Dr Stephen Ginn. My view is that there was, and still is, something fundamentally wrong with psychiatry and its rigid adherence to the medical model with its heavy drugging, damaging treatment and the claims that the schizophrenia label has a scientific basis.

On the other hand, if I don’t say I was misdiagnosed, some people think I must then have recovered from schizophrenia (whereas what I needed to recover from was the treatment). I would love to offer hope to others, but I am anxious to avoid the false and dangerous implication that anyone diagnosed with schizophrenia should be able to come off their medication and build up a life for themselves, as I was able to do. Unfortunately some people can’t, though it doesn’t mean they are less ‘strong’ than me, or that they actually do have an illness called ‘schizophrenia’.

Maybe I’m wrong to say I was ‘misdiagnosed’. But can you see my dilemma? Perhaps every diagnosis of ‘schizophrenia’ is really a misdiagnosis. It certainly makes sense to me to agree with those who see good reasons for the schizophrenia label to be abolished, such as the Inquiry into the ‘Schizophrenia’ Label. Meanwhile, we ‘psychiatric system survivors’ have to struggle to express ourselves with inadequate terminology. This being so, I hope that people can understand what I mean.

30 thoughts on “Misdiagnosis? Schizophrenia? Emperor’s new clothes?

  1. Well put Jean. I myself was labelled manic depressive/bi polar, but managed to avoid getting hooked on the prescribed drugs and am now completely recovered from what psychiatry calls “manic depression/bi polar”, whereas my sister got sucked into the psychiatric system and is, I believe, suffering from the treatment meted out to her by this system that doesn’t have a clue what it is dealing with.

  2. Jean, Thanks, great post, thought provoking as usual. I agree that diagnostic labels attached to people experiencing mental distress, categorised by using the DSM, and the subsequent treatment, often cause more harm than good, as you point out ‘symptoms’ are often appropriate responses to less than useful life events, using medication might dull these realities but in so doing can leave other disabling factors in the person’s life. Finding alternative or complimentary support for distressed people is not easy, the chaos I experienced when emotionally very ill at ease could not be contained by friends or family, thankfully some psychiatrists are working
    towards change and they are being led by ‘experts by experience’, like yourself, speaking out, choosing words carefully, deconstructing long used terminology, sticking as close to the truth of
    our experiences as necessary is vital.

    • Thanks for your comments, Su. As you say, some mental health practitioners are working hard towards innovative change together with service users. Hopefully there will come a time when appropriate care, which meets an individual’s needs, can be offered to those ‘in crisis’.

    • Hello Sarah. Yes, it can be such a struggle trying to find the ‘right’ words to express what we mean. I suppose words are always going to be an imperfect, though of course necessary, tool.

  3. Thanks for your story.My wife was told that she suffered from depression, then Bipolar then Schizophrenia and last schizoeffective disorder.She still takes some meds but has decreased the amount over time.She has been labelled since 1977′ a bloody long time.I have lost all faith in the system. Regards Wouter.

  4. Thank you for visiting my blog, Wouter. Sorry to hear that your wife has been in the system for so long and been given four different labels during that time. It must be very upsetting and frustrating for you both. I think this kind of labelling indicates the subjectivity of the diagnostic process and it highlights the great need for change. Warmest wishes, Jean.

  5. Jean this is a thought provoking post. It seems that every emotion we have is now being labelled with a psychiatric definition. I know that Dr Terry Lynch is a great advocate for those diagnosed with mental health problems and he thinks that there is a great deal wrong with our current system and is working for change. I completely see your dilemma regarding misdiagnosis or not and think you have outlined it brilliantly. I think there is a long way to go before mental health is understood and I am just so sad that you endured such horrors within the system. Take care, Jean.

  6. Hi Jean. Great article. I totally agree with your important point about misdiagnosis. It is a point I have made several times over the years, including in my first book Beyond Prozac, ten years ago now. The term “misdiagnosis” is often used when a person recovers in order to protect the credibility of the diagnostic system. I had another example of this just recently. A man I worked with for four years (recovery takes time and a lot of careful work in my experience) with a diagnosis of bipolar for 30 years has made a full recovery, off all medication for 6 months and doing just fine. I happened to meet his GP a few weeks ago, a very good GP as it happens, and his only way of making sense of the recovery was that the man must have been diagnosed in the first instance. I quickly and gently pointed out to the GP that I could see precisely why he was so diagnosed, as he did indeed have several manic and depressive episodes. A paradigm shift is urgently required. Best wishes, Terry.

      • Hi Terry, lovely to see you here, and thanks for commenting. Even thinking of diagnosis as no more than a construct built on subjective opinions of psychiatrists my so-called ‘symptoms’ didn’t seem to fit their criteria, so I occasionally said ‘misdiagnosis’. When my publishers, back in 2009, began promoting my memoir using that word, I didn’t object. So mea culpa! However, I can now see why it’s important not to use this term, which as you say can be used to ‘protect the credibility of the diagnostic system’. I need to be more careful about the words I use, to ensure that I’m not inadvertently colluding with views I don’t hold!

    • Praise God this man has made a recovery and is off all medication after 30 years. That certainly gives hope for others who have been stuck in the psychiatric system for a long time.

  7. I inherited a great book from the library of Information for Mental Health when it closed down in Leeds – Models of Madness, edited by John read, Loren Mosher and Richard Bentall which chronicles the history of the term ‘schizophrenia’, and concludes (if I remember right) that research in the area is so flawed that it doesn’t really show anything – people have used such different definitions as time has changed. I too was labelled with having paranoid schizophrenic episodes as a young man, and I attribute my ‘recovery’ from whatever it was to rejecting that label. The book seems expensive to buy – I’ll gladly make it available to anyone who wants a read. http://www.routledge.com/books/details/9780415579537/

  8. Very thought provoking post. I work as a therapeutic writing practitioner in mental health wards and tend to consider symptoms, such as psychosis, and ways of thinking, such as negative or intrusive thoughts, rather than diagnosis when I work with people. I can see that diagnosis may be important to identify the best treatment but I do think there has been too much emphasis on medicines and the medical model for too long. I hope things are beginning to change. Best wishes, Carol Ross.

  9. Hi Jean, I’ve had a read of the extracts from the Dark Thread and juts read this blog post. It is something that has clearly had a massive impact on your life, being diagnosed with schizophrenia. In my humble opinion I think we are too quick to label people and also dish out medication. I will have a further read very soon. Keep up the blogging, there is most certainly a need for people to have more open discussions about this subject.

  10. Thank you so much for writing this. I had a nervous breakdown when I was 16 and was admitted to hospital, they asked me several yes or no questions (some I didnt fully understand and when I asked what they ment, they simply told me to answer yes or no) I was then diagnosed with schizophrenia and put on heavy medications that changed me completely and broke me down. Both me and my parents begged them to reconsider. When I got a lot of side effects and the medication only made me worse not better the doctors responded with first giving me higher dozes- then changing the medication and the circle continued. When I was 18 I stopped taking them and it felt as if someone lifted a bag of bricks of my head. I finished school and things got better, I have never had symptoms before or after my breakdown, but when I tried to tell my doctors that I disagreed with my diagnosis I was told that not believing I’m ill is a symptom of schitzophrenia becaus we “lack insight”. When I read “what I needed to recover from was the treatment”, it really struck a cord with me- that is exactley what it was like. First I asked for help with my breakdown, then I had to help myself from the “help” I got.

  11. Thank you for sharing your story, Marianne. I well remember feeling as you describe on coming off medication, as if a ‘bag of bricks’ had been lifted off my head. It’s interesting the way some psychiatrists define ‘insight’ and how what they might see as ‘lack of insight’ is sometimes when their patient has actually reached a stage of gaining the most insight. I’m glad things are working out well for you now.

  12. Hey,
    I was diagnosed schizophrenic, no delusion, no voices or halucinations, just “negative syndroms” : lack of motivation, not going out of my house, being on the computer all day, social anxiety and overthinking. I took the meds for three months and because they were not working at all, just making my life worse. I stopped by myself because the doctor did not agree to do so.
    I don’t think I am schizophrenic or have any mental disorder at all nore do my friends or family.
    I want a second diagnosis, I took an apointment with a psychiatrist, could you please help me and tell me what I should tell him ? I am affraid if I tell him I was diagnosed with schizophrenia, he will either say “you are in remission” or that it would simply influence his judgement….
    How should I ask ?
    Thank you per advance,
    Really looking forward to your answer.

    • Thank you for your comment, which I’ve just seen (I didn’t delete anything).
      I’m sorry you were given this unhelpful diagnosis and prescribed meds that made you feel worse. As you say you are going to see another psychiatrist and want a second diagnosis, so maybe you could take a trusted friend or family member with you for support.
      In the UK the new psychiatrist would be likely to know your previous diagnosis from case notes, but you could request a second opinion, or, alternatively, perhaps you could ask your GP if there are other options instead of psychiatry, such as counselling. I don’t know what the situation is if you live outside the UK.
      I can’t say more as it wouldn’t be appropriate for me to give advice and, ultimately, it has to be your decision, based on what kind of help you feel you need. I’m sorry about the situation you find yourself in and hope you can resolve it.

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