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'Schizophrenic' label doubles the torture felt by sufferers

v01ce5

v01ce5

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By Martin Johnston in New Zealand Herald 19th November 2007

Peter Bullimore still hears aggressive voices inside his head, but he has rejected the stigmatising label of "schizophrenia" and is now campaigning for it to be discarded.

Schizophrenia is a long-accepted diagnostic category in psychiatric manuals used by mental health workers. But it is also a word loaded with cultural meaning, stereotypes and fear. Searching the combination "schizophrenia and murder" in the Herald's 8-year-old computerised clippings file produced 93 results.

Mr Bullimore, 46, from Britain, an advocate for consumers of mental health care who last week addressed the Making Sense of Psychosis conference at Auckland University, said he had been repeatedly victimised because of his schizophrenia label. He naively told others of the diagnosis, at first not realising what this could lead to.

"I had my face and body slashed. I was spat at. They wrote on my windows 'schizo out'."

After his wife threw him out, he lived at a housing estate which was a "dumping ground" for the mentally ill.

"People asked, 'What are you doing around here?' and I said I had lost my family because I had got schizophrenia. You can't envisage the backlash you are going to get just by being honest."

His recovery began when he joined a group for people who heard voices. He had been using numerous psychiatric medicines but stopped taking them in 1999.

"I've reclaimed my life by getting rid of the label schizophrenia," Mr Bullimore said. "I'm proud to say I'm a voice-hearer."

The voices were mainly negative. The main one was the voice of the person who physically and sexually abused him when he was aged between 5 and 13. He attributes the fact he hears voices to that trauma.

He said that sometimes the voices told him to harm others, but he never had. They also told him to harm himself and in the past he had obeyed, "but in later years I'm more in control of this".

Facing his abuser and telling her that what she had done was wrong had helped him greatly. After this, when he heard her voice in his head, he was no longer afraid.

His co-campaigner, Paul Hammersley, the head of a cognitive behaviour therapy programme at Manchester University, said schizophrenia as a label was out-of-date, based on weak science and of little use.

Instead, it could be split into anxiety psychosis, sensitivity psychosis, drug-related psychosis and post-traumatic psychosis.


Auckland University's head of psychological medicine, Professor Rob Kydd, said he sympathised with objections over the stigma associated with the word schizophrenia.

"But I'm a bit concerned about people moving on too quickly before they have sorted out what's going to replace it."
 
Bluemoon

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This is exactly the reason I don't tell anyone about my diagnosis. I haven't had a girlfriend in years because I'm scared of getting close to someone and them leaving once they find out what my diagnosis is. I did spend some time on an estate myself for four weeks and it was a scary experience because of the yobs hanging around. I was in a shared house, but the guy I was sharing with was very in-considerate and I had to come back home. I still live with my mum, so I feel embarrassed about that more than anything since all my old friends have married or are living with someone at the moment. To be honest I'm very afraid of people finding out about my illness because of the things that I've read regarding what happens to others in my situation. The voices reflect that and I'm always hearing ( or rather imagining I'm hearing ) my neighbours saying things like, "We know he has a mental illness, why doesn't he work ? He can't get himself a girlfriend dear o dear" - that is just a small sample of the stuff I hear most of the time at home. I like getting out of the house and going elsewhere because it helps, but not entirely - I've heard things like "what's that silly <insert swearword here> staring at ?" when being in the car - but I know sound can't travel through the windscreen etc. I get by through challenging what I hear and that gives me strength but sometimes I could just burst in to tears since it reminds me of being bullied as a young teenager - probable cause.
 
midnight

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I am the same I tell people I have bipolar but I do not tell them I have pschosis ( which is actually the main issue for me) because they will not understand

not sure replacing schizophrenia with the word psychosis will be any better for anyone given the misuse of the term. Just think of the 'psycho' movies. Hows that going to help?
 
daffy

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I dont tell people about the voices, and most i say i have depression, (when what it is bipolar with anxiety and psychosis)

I didnt understand what was happening to me . I thought everyone heard voices so for a long time said noting about it. I dont usually hear anything about harming others thank goodness.

I usually hear voices criticising me. Questioning the way im dressed, either over dressed or scruffy. I sometimes think i hear my mothers voice. My hardest voice though is the one that urges me to harm myself. Usually by sticking needles in my neck, or wrapping something round my neck, which is very frightening.
 
midnight

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i have admitted bipolar to a few close people. I have psychosis too but I don't think I have voices but I have an inner guidance, (urges to kill myself or at least I have). It is usually in the form of overdose I don't know how many I have taken, loads, but you probably have the same memory blanks as me. I remember the last one but that was a long time ago nearly 12months so I am doing well
 
Bluemoon

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My first diagnosis was stress-induced psychosis and a year later was changed to Schizophrenia. I tell people that I have a sleeping disorder and have to take medication for that - which is true, I do have trouble getting to sleep until the early hours of the morning and the meds I'm on help that too. No one seems to react to that in a negative/ stigmatizing way so that is what I will stick with.

I have never had voices urging me to do violent things to others, but they do tell me that someone wants to be beat me up occasionally - especially when I plan to go to the pub.

When I first starting hearing the voices, they were all positive and encouraging but gradually became a mixed bag of both positive and negative things. I had a call centre job at the time having to speak with customers and imagining hearing my colleagues saying things like, "he's going to get fired, " amongst other things made me quit my job eventually.
 
v01ce5

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Are voices really a sgn of a disease though?

Whilst voice hearing is often seen as a prime symptom of psychosis and is considered a first rank symptom of the specific psychosis of schizophrenia (Schneider, 1959) it is also associated with other conditions and is expereinced by people who have no diagnosis.

There are three main psychiatric categories of patients that hear voices; schizophrenia (around 50%); affective psychosis (around 25%) and dissociative disorders (around 80%).

However, hearing voices in itself is not a symptom of an illness, but is apparent in 2 - 4 % of the population, some research gives higher estimates and even more people (about 8%) have so called "peculiar personal convictions", that are sometimes called "delusions", and do so without being ill.

Many people who hear voices find them helpful or benevolent. In a large study of 15,000 people it was found that there was a prevalence of 2.3% who had heard voices frequently and this contrasts with the 1% prevalence of schizophrenia.

Whilst one in three people who hear voices become a psychiatric patient - two in three people can cope well and are in no need of psychiatric care. No diagnosis can be given because these 2 out of 3 people who hear voices are quite healthy and function well.

It is very significant that in our society there are more people who hear voices who have never been psychiatric patients than there are people who hear voices and become psychiatric patients.
 
Bluemoon

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^^ Interesting post

My older brother has admitted that he hears voices from time to time, especially at work under times of high stress. I will admit that before I was ill I did imagine things being said from time to time, especially when I was having a hard time at high school. The difference is back then, I knew it was just my imagination and dismissed it as unimportant - right now though that is not so easy to do as the voices I hear are so real and there are times where I can't decide if they are real or not.

My assertive outreach visitor did say that hearing voices doesn't necessarily mean you are ill and that many people hear them, but reading your post just cemented things a bit more for me.
 
Rambuie Perspecador

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Blotting out the Sun

I had thought that with a Brand New Forum, we would have a level playing-area to make our contributions. But in my opinion, the same old Monsters are rearing their ugly heads. No longer do I wonder why some people with 'Bipolar' have so much to say about obliterating the identities of people with schizophrenia. Now I know. I feel that some 'Bipolar' people are masqueraders - people whose real diagnosis is schizophrenia, but who gag at their prognosis of a life-time of mental ill-health. Face it, we have no chance in hell, if no one can identify and distinguish between a condition with no manic/low polarity, and a condition for which litihium and tricyclics are an obnoxious poison and who need to be identified as separate and with schizophrenia. People can go fog their own chances of recovery, it is their right. But I for one will not stand by while they jettison all hope for the people who need to get on the road to recovery - who NEED to be identified.
 
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Rambuie Perspecador

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The same old scene

I had thought that with a Brand New Forum, we would have a level playing-area to make our contributions. But in my opinion, the same old Monsters are rearing their ugly heads. No longer do I wonder why some people with 'Bipolar' have so much to say about obliterating the identities of people with schizophrenia. Now I know. I feel that some 'Bipolar' people are masqueraders - people whose real diagnosis is schizophrenia, but who gag at their prognosis of a life-time of mental ill-health. Face it, we have no chance in hell, if no one can identify and distinguish between a condition with no manic/low polarity, and a condition for which litihium and tricyclics are an obnoxious poison and who need to be identified as separate and with schizophrenia. People can go fog their own chances of recovery, it is their right. But I for one will not stand by while they jettison all hope for the people who need to get on the road to recovery - who NEED to be identified.
Clearly, this forum is for people to talk - at great length it seems, -about people with Schizophrenia, not TO them. Futile for me to reply then, because I am not invited to defend my position on your annexations of my issues! So I just say it is Utter twaddle to assume Science has anything on what happens Organically in the workings of our minds. Also a Complete Travesty to dismiss schizophrenia as a 'concept!' You might be able to imagine me away, but I am not a figment of your imagination simply because you want to stop believing I exist!!! Abolish the term schizophrenia??? Pedantic Tripe!
 
connect

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Hi :welcome:,

while I believe that your intentions and motives are good, and that you have a lot to contribute, personally I thought that tone in which the arguments were presented felt quite menacing. This may discourage others from voicing their opinions openly on this forum. One of our aims is for the Mental Health Forum to be the friendliest place on the web to discuss mental health issues.

This does not mean that debate should be stifled, but it does mean that members are encouraged to respect the opinions of others, so that nobody feels threatened or unable to speak up.

We'd like to encourage everyone to voice their arguments in such a way that others do not feel threatened, and to refrain from personal accusations. Such accusations may alienate other readers and posters, and not only those who are "under attack".

Thanks :)!
 
Rorschach

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Clearly, this forum is for people to talk - at great length it seems, -about people with Schizophrenia, not TO them. Futile for me to reply then, because I am not invited to defend my position on your annexations of my issues! So I just say it is Utter twaddle to assume Science has anything on what happens Organically in the workings of our minds. Also a Complete Travesty to dismiss schizophrenia as a 'concept!' You might be able to imagine me away, but I am not a figment of your imagination simply because you want to stop believing I exist!!! Abolish the term schizophrenia??? Pedantic Tripe!
See bold. You need to get a grip mate, I've been labelled with the diagnosis of Schizophrenia (Schizoaffective Disorder at other times, but splitting hairs) and the reason that not many people are really discussing the condition is that there's only about 50 members; hopefully more will join.

Schizophrenia aka dementia praecox IS now (and for some time) considered an umbrella term that covers many actual conditions. As science discovers the differences between the conditions they will get their own name, but until then we're stuck with Schizo'. As to other posts regarding labelling theory and the damage it can do, its less about making the condition a 'figment of imagination' rather recognising the stigma it can cause, and in light of the weak evidence for one condition (and label) used during the development of social and neuropsychiatry its time to move on. Nobody here is going to tell you not to use the term for self designation; you feel 'the cap fits...' etc, jog on.
 
Bluemoon

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See bold. You need to get a grip mate, I've been labelled with the diagnosis of Schizophrenia (Schizoaffective Disorder at other times, but splitting hairs) and the reason that not many people are really discussing the condition is that there's only about 50 members; hopefully more will join.

Schizophrenia aka dementia praecox IS now (and for some time) considered an umbrella term that covers many actual conditions. As science discovers the differences between the conditions they will get their own name, but until then we're stuck with Schizo'. As to other posts regarding labelling theory and the damage it can do, its less about making the condition a 'figment of imagination' rather recognising the stigma it can cause, and in light of the weak evidence for one condition (and label) used during the development of social and neuropsychiatry its time to move on. Nobody here is going to tell you not to use the term for self designation; you feel 'the cap fits...' etc, jog on.
I agree with what you said ^^^. What I'm tired of is the misinterpretation of Schizophrenia, since most people I come in to contact with tend to believe it means "split mind" - the very Greek derived name of "Schizophrenia" needs to be changed to something that defines the illness betters and more so accurately.

Remember the Jim Carey film, "Me, myself and Irene" ?
Another inaccurate mickey-take of people who suffer from Schizophrenia. The people who allowed this film to be made need making aware of what damage they are doing i.e. just giving the general public more excuse to stigmatise us :mad:.
 
Rorschach

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To be honest Bluemoon it's a problem. The stigma even effects those who are diagnosed with the condition. I personally think that is why people take so long to come around to treatement i.e. the social stigma makes them themselves reject the diagnosis and thus remain in a bad place. Recovery usually happens when they get bored of relapses and think 'screw this I'm bored of hospital'. Personally I've grown to quite like the stigma, it allows me to sort the wheat from the chaff, anyone who has a problem with the mentally ill on those grounds alone certainly don't deserve any of your (our/my) time. Then there is always the way people can relate to you with a positive experience of the illness(es) they can take with them i.e. 'I knew a Schizophrenic once, nice guy/gal, bit odd, but interesting and empathetic.' ;)
 
Bluemoon

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To be honest Bluemoon it's a problem. The stigma even effects those who are diagnosed with the condition. I personally think that is why people take so long to come around to treatement i.e. the social stigma makes them themselves reject the diagnosis and thus remain in a bad place. Recovery usually happens when they get bored of relapses and think 'screw this I'm bored of hospital'. Personally I've grown to quite like the stigma, it allows me to sort the wheat from the chaff, anyone who has a problem with the mentally ill on those grounds alone certainly don't deserve any of your (our/my) time. Then there is always the way people can relate to you with a positive experience of the illness(es) they can take with them i.e. 'I knew a Schizophrenic once, nice guy/gal, bit odd, but interesting and empathetic.' ;)
The only time I had stigma was both during my first and second episodes. I was at university during my first episode and I lost a lot of friends because I was no longer "happy and bubbly" any more - that's all that seemed to matter to them, to be associated with that type of person. I soon found out who my true friends were, but I didn't have that many - there seems to be a lot of chaff out there to be honest. My second episode affected my flatmates that I had know for over a year and a half, when I became ill and moved back home, they wanted nothing to do with me - even though they did ring to ask how I was, they needed me to pay some of the bills. After that, nothing - when I tried to get back in touch with some of them again, they acted disinterested so I left it at that. Even my old classmates were cold towards me. People I have met since though, when I tell them about my diagnosis, always say - "You seem perfectly normal to me" which is fine but I could tell with some that they don't feel so comfortable with me as their other friends. I don't tell anyone any more because I just hate to do so. Any future girlfriends though, will have to know at some point and I think sooner rather than later - but not too soon, must let them get to really know me first.

Lastly, there was another student at my university who told me outright that he had schizophrenia - I told him that I had it too, but to keep it to himself as I told him what I experienced. He said that people tended to accept him quite well after his diagnosis - I guess I just had a bad group of friends. I think if they'd been longer term friends things may have been different.
 
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