Thank you for sharing your powerful story. Much of what you say here resonates with my experiences of psychiatry as a teenager in 1968. It’s appalling that many of the wrongs you articulate so clearly still continue in one form or another in the mental health system to the present day. Thank you for all the work you do to bring about the still so much needed change.
I know your comments, Ron Unger, were addressed to Marian, and I hope you don’t mind me chipping in with my thoughts. This is something I have thought long and hard about. I agree with you that if a person is said to be ‘misdiagnosed with schizophrenia’, this can be seen to imply that others do have an illness called schizophrenia. I am not happy with this, even though I do sometimes say that I was misdiagnosed (for reasons I’ll try to explain).
In my teens I was diagnosed and treated (in UK) for ‘chronic schizophrenia’ despite never having had the so-called ‘positive symptoms’ such as hearing voices, delusional beliefs, hallucinations and so on. My ‘symptoms’ were social withdrawal, flattening of affect, lack of interest (so-called ‘negative’ symptoms on which a diagnosis of the ‘simplex’ form of schizophrenia was based). There were situational reasons for my so-called ‘symptoms’ which, like for many with a schizophrenia diagnosis, were not taken into account. I was treated for five years with heavy neuroleptic medication. I’ve been fine since I managed to get myself off all the medication and leave the psychiatric system.
Nowadays people (including the publishers promoting my memoir, psychiatrists and others who have read my book or know me) say that I was misdiagnosed with schizophrenia. I’m not happy with this for the reason you describe. I do believe that I never did have ‘schizophrenia’ – but does anyone? However, if I don’t say I was misdiagnosed, some people think I must then have recovered from schizophrenia. But this ‘recovery’ idea (and also the idea that an illness called schizophrenia does not exist, a view I lean towards), can lead to the 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? I suppose every diagnosis of ‘schizophrenia’ is really a misdiagnosis and the schizophrenia label should be abolished. But, meanwhile, we ‘psychiatric system survivors’ have to struggle to express ourselves with inadequate terminology and hope people will understand what we mean.
I don’t think it’s that ‘schizophrenia’ has got nothing to do with people’s life story. More like people’s life story has got nothing to do with ‘schizophrenia’, though of course a person’s life story can bring about the thoughts and behaviour that might lead to a person being given this diagnosis, wrongly in my opinion. Surely a person’s normal responses to traumatic events should not be given the label of ‘schizophrenia’. There are serious flaws in the psychiatric diagnostic process.
Great to hear how Alan is progressing. Being diagnosed with ‘schizophrenia’ can sometimes be a life sentence, not because of the so-called ‘illness’ but because of the debilitating psychiatric treatment dictated by the stigmatising label. I’m so glad Alan is receiving appropriate help.
“We need to help people who are homeless get off the street and into safe housing.”
Oh, yes, definitely.
Homeless teens on a downward spiral who find their way into the psychiatric services may end up with a stigmatising diagnosis, and the effects of damaging treatment, to add to their problems. Diagnoses such as schizophrenia or personality disorder are often used to describe what are really reactions to ongoing traumatic experiences, such as homelessness often preceded by the trauma of childhood abuse.
My work for a mental health charity includes supporting people whose post traumatic stress disorder has been compounded, if not solely caused, by their experiences of psychiatric services. I think that teenagers who feel it’s safer to trade their bed in a psychiatric unit for a bench in the park may not be entirely wrong, dreadful though that is.
“The bias for those who have confidence in the overall efficacy of medication is to believe that when someone does well it is the result of the medication and when somebody does not do well it is the result of the underlying illness.”
Too true! I see from my case notes that when, unbeknown to staff, I had reached a point where I had significantly cut down my meds by secretly tapering, the staff interpreted my undeniable improvement as being due to my meds. But when I’d been taking the full dose as prescribed, my drowsy depression and ‘flattened affect’ was seen as symptoms of illness. When I managed to get off all meds, my so-called symptoms of illness never returned. I’m not saying everyone will be fine off meds, but I’m sure that mental health professionals who hold unswerving belief in the efficacy of medication are doing some of their patients far more harm than good.
Thank you for sharing your powerful story. Much of what you say here resonates with my experiences of psychiatry as a teenager in 1968. It’s appalling that many of the wrongs you articulate so clearly still continue in one form or another in the mental health system to the present day. Thank you for all the work you do to bring about the still so much needed change.
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I know your comments, Ron Unger, were addressed to Marian, and I hope you don’t mind me chipping in with my thoughts. This is something I have thought long and hard about. I agree with you that if a person is said to be ‘misdiagnosed with schizophrenia’, this can be seen to imply that others do have an illness called schizophrenia. I am not happy with this, even though I do sometimes say that I was misdiagnosed (for reasons I’ll try to explain).
In my teens I was diagnosed and treated (in UK) for ‘chronic schizophrenia’ despite never having had the so-called ‘positive symptoms’ such as hearing voices, delusional beliefs, hallucinations and so on. My ‘symptoms’ were social withdrawal, flattening of affect, lack of interest (so-called ‘negative’ symptoms on which a diagnosis of the ‘simplex’ form of schizophrenia was based). There were situational reasons for my so-called ‘symptoms’ which, like for many with a schizophrenia diagnosis, were not taken into account. I was treated for five years with heavy neuroleptic medication. I’ve been fine since I managed to get myself off all the medication and leave the psychiatric system.
Nowadays people (including the publishers promoting my memoir, psychiatrists and others who have read my book or know me) say that I was misdiagnosed with schizophrenia. I’m not happy with this for the reason you describe. I do believe that I never did have ‘schizophrenia’ – but does anyone? However, if I don’t say I was misdiagnosed, some people think I must then have recovered from schizophrenia. But this ‘recovery’ idea (and also the idea that an illness called schizophrenia does not exist, a view I lean towards), can lead to the 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? I suppose every diagnosis of ‘schizophrenia’ is really a misdiagnosis and the schizophrenia label should be abolished. But, meanwhile, we ‘psychiatric system survivors’ have to struggle to express ourselves with inadequate terminology and hope people will understand what we mean.
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I don’t think it’s that ‘schizophrenia’ has got nothing to do with people’s life story. More like people’s life story has got nothing to do with ‘schizophrenia’, though of course a person’s life story can bring about the thoughts and behaviour that might lead to a person being given this diagnosis, wrongly in my opinion. Surely a person’s normal responses to traumatic events should not be given the label of ‘schizophrenia’. There are serious flaws in the psychiatric diagnostic process.
Report comment
Great to hear how Alan is progressing. Being diagnosed with ‘schizophrenia’ can sometimes be a life sentence, not because of the so-called ‘illness’ but because of the debilitating psychiatric treatment dictated by the stigmatising label. I’m so glad Alan is receiving appropriate help.
Report comment
“We need to help people who are homeless get off the street and into safe housing.”
Oh, yes, definitely.
Homeless teens on a downward spiral who find their way into the psychiatric services may end up with a stigmatising diagnosis, and the effects of damaging treatment, to add to their problems. Diagnoses such as schizophrenia or personality disorder are often used to describe what are really reactions to ongoing traumatic experiences, such as homelessness often preceded by the trauma of childhood abuse.
My work for a mental health charity includes supporting people whose post traumatic stress disorder has been compounded, if not solely caused, by their experiences of psychiatric services. I think that teenagers who feel it’s safer to trade their bed in a psychiatric unit for a bench in the park may not be entirely wrong, dreadful though that is.
Report comment
“The bias for those who have confidence in the overall efficacy of medication is to believe that when someone does well it is the result of the medication and when somebody does not do well it is the result of the underlying illness.”
Too true! I see from my case notes that when, unbeknown to staff, I had reached a point where I had significantly cut down my meds by secretly tapering, the staff interpreted my undeniable improvement as being due to my meds. But when I’d been taking the full dose as prescribed, my drowsy depression and ‘flattened affect’ was seen as symptoms of illness. When I managed to get off all meds, my so-called symptoms of illness never returned. I’m not saying everyone will be fine off meds, but I’m sure that mental health professionals who hold unswerving belief in the efficacy of medication are doing some of their patients far more harm than good.
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Thank you for so much for sharing this, Olga. What more can I say?
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