Calls to end stigma of schizophrenia ‘label’ Word is a disease in itself, patients and experts say IT IS a label that feels like a life sentence, dooming sufferers to a life of verbal abuse and second-class-citizen status.
Ron Coleman, diagnosed with schizophrenia in 1982 and treated with electro-shock therapy and drugs, has cited his own nightmare experience in the psychiatric system to call for the term to be dropped altogether.
The 49-year-old from Fife said: "I lived the schizophrenia label instead of living as a person. People treat you as if you're a piece of crap, talk to you like a non-person. I got people battering on the door, shouting psycho' and throwing things at the window. I spent 10 years in a drug-induced, zombied haze.."
"I still hear voices, but I've found a way of living with them. It was only when I turned away from psychiatric medication that my life totally turned around. Since then I've got married, had kids, got a house and love going to work every day."
A growing number of mental health experts in Scotland agree that cases like Coleman's demonstrate the need to scrap the term schizophrenia, since it has, they believe, become a stigmatised and scientifically redundant category.
"It's a loaded, dated label and it can be difficult to see beyond," said Eddie McCann, senior lecturer in mental health at Napier University. "It gives the impression that it is a perpetual state, but people do get better and lead fulfilling lives.
"The label is connected to approaches dating back almost 100 years ago. We have to think about new categories based on different types of distress. Drugs have a place, but there are huge possibilities for therapeutic work."
Traditionally, advocates of the schizophrenia diagnosis argue that the illness is a deteriorating condition arising from increased activity in the brain of the neurotransmitter dopamine. Yet the success of behavioural therapies and counselling at the Scottish Hearing Voices Network in Dundee suggests that it may be traumatic experiences and other social factors that lead to the development of psychoses.
"The idea that you've got a brain disease from which you'll never recover is just not true," said Paul Hammersley, a cognitive-behavioural therapist leading the Campaign for Abolition of the Schizophrenia Label (CASL). "The claim that there is a medical condition called schizophrenia doesn't stand up to scrutiny. It's an appallingly stigmatising diagnosis. It can ruin lives."
Coleman added: "It's clear to me that hearing voices was created by my experience of abuse, not biology, not this thing we call schizophrenia, which itself disables people."
In Japan, the term schizophrenia has been replaced with the term "integration disorder", although some believe stigma would soon become attached to any new label. Instead, there is growing support for splitting the symptoms into new sub-categories including sensitivity, anxiety, trauma-related and drug-induced psychosis, since these may point toward more nuanced methods of recovery.
Andrew Moskowitz, senior lecturer at Aberdeen University's department of mental health, said: "When it was first proposed almost 100 years ago, it was called the group of schizophrenias. There's a long-standing belief in sub-groups. The challenge is in re-classifying an individual's symptoms so you can actually help them."
Yet Marjorie Wallace, chief executive of the mental health charity Sane, believes the word is still necessary to raise awareness and attract funding. "While we recognise that the term can act as a stigmatising label," she said, "without identifying this condition as a serious illness, how can there be any hope of researching it and providing better treatments?"
But Paul Hammersley is adamant that such reluctance is unhelpful. "If schizophrenia is a flawed concept, then we have to question what we're raising awareness and money for," he said.
Dr Andrew Gumley, senior lecturer in clinical psychology at Glasgow University and a consultant at Gartnavel Hospital, said the term schizophrenia told doctors and carers very little about the best modes of recovery. "Scotland has been really strong about new approaches, and there's a growing recognition that there needs to be an individualised understanding of recovery," he said.
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Posted by: Harold A. Maio on 1:05am Sun 4 Nov 07
http://www.sundayher
ald.com/news/heraldn
ews/display.var.1807
833.0.calls_to_end_s
tigma_of_schizophren
ia_label.php
Calls to end 1. stigma of schizophrenia 2. ‘label’
May I please call upon you to end the practice of assigning the term "stigma." You do harm imposing that term.
"Label." You err, it is a diagnosis. Can you explain your purpose in not so recognizing it? I can explain the effect, people diminish it.
The role of journalism in educating the public mirrors that of other professions, whose comments in this article are often equally unamusing.
This is the most un-amusing:
"...Marjorie Wallace, chief executive of the mental health charity Sane, believes the word is still necessary to raise awareness and attract funding. " InSane, absolutely insane.
Harold A. Maio
Advisory Board
American Journal of Psychiatric Rehabilitation
Board Member
Partners in Crisis
Former Consulting Editor
Psychiatric Rehabilitation Journal
Boston University
Language Consultant
UPENN Collaborative on Community Integration
of Individuals with Psychiatric Disabilities
Home:
8955 Forest St
Ft Myers FL 33907
khmaio@earthlink.net
239-275-5798
http://www.sundayher
ald.com/news/heraldn
ews/display.var.1807
833.0.calls_to_end_s
tigma_of_schizophren
ia_label.php
Calls to end 1. stigma of schizophrenia 2. ‘label’
May I please call upon you to end the practice of assigning the term "stigma." You do harm imposing that term.
"Label." You err, it is a diagnosis. Can you explain your purpose in not so recognizing it? I can explain the effect, people diminish it.
The role of journalism in educating the public mirrors that of other professions, whose comments in this article are often equally unamusing.
This is the most un-amusing:
"...Marjorie Wallace, chief executive of the mental health charity Sane, believes the word is still necessary to raise awareness and attract funding. " InSane, absolutely insane.
Harold A. Maio
Advisory Board
American Journal of Psychiatric Rehabilitation
Board Member
Partners in Crisis
Former Consulting Editor
Psychiatric Rehabilitation Journal
Boston University
Language Consultant
UPENN Collaborative on Community Integration
of Individuals with Psychiatric Disabilities
Home:
8955 Forest St
Ft Myers FL 33907
khmaio@earthlink.net
239-275-5798
Posted by: Lwett on 7:36pm Mon 5 Nov 07
I once had a friend, Jenny, who was an elderly lady with this mental condition and diabetes, that killed her unexpectedly.
[italic]She had to wait 15 years for the right medication (haloperidol) that turned her life around.[/italic]
She was hospitalised on two occasions for longer periods and probably tested as a guinea pig.
When I think of her, after I witnessed her sufferings regularly, it brings tears to my eyes. Nobody else could cope with her behaviour except her husband and I.
My comment on this article is that compared to what these patients have to endure the "name game" is so trivial. I know that Jenny wouldn't object. BTW, she was also in a Japanese prison camp.
I once had a friend, Jenny, who was an elderly lady with this mental condition and diabetes, that killed her unexpectedly.
She had to wait 15 years for the right medication (haloperidol) that turned her life around.
She was hospitalised on two occasions for longer periods and probably tested as a guinea pig.
When I think of her, after I witnessed her sufferings regularly, it brings tears to my eyes. Nobody else could cope with her behaviour except her husband and I.
My comment on this article is that compared to what these patients have to endure the "name game" is so trivial. I know that Jenny wouldn't object. BTW, she was also in a Japanese prison camp.
Posted by: For Jenny, <3 on 9:45pm Mon 5 Nov 07
Letter from [italic][bold]VINCENT VAN GOGH[/bold] [/italic] to his beloved brother THEO.
May 22 1889
Again - speaking of my condition - I am so grateful for yet another thing. I've noticed that others, too, hear sounds and strange voices during their attacks, as I did, and that things seemed to change before their very eyes. And that lessened the horror with which I remembered my first attack, something that, when it comes upon you unexpectedly, cannot but frighten you terribly. Once you know it is part of the illness, you accept it like anything else. Had I not seen other lunatics close too, I should not have been able to stop myself from thinking about it all the time. For the suffering and the anguish are not funny when you are having an attack.
Most epileptic bite their tongue and injure themselves. Rey told me that he had seen a case where someone had mutilated his own ear, just as I DID, and I think I heard a doctor from here (the mental hospital), who came to see me with the director, say that he too had seen it before. I like to think that once ......
Letter from
VINCENT VAN GOGH to his beloved brother THEO.
May 22 1889
Again - speaking of my condition - I am so grateful for yet another thing. I've noticed that others, too, hear sounds and strange voices during their attacks, as I did, and that things seemed to change before their very eyes. And that lessened the horror with which I remembered my first attack, something that, when it comes upon you unexpectedly, cannot but frighten you terribly. Once you know it is part of the illness, you accept it like anything else. Had I not seen other lunatics close too, I should not have been able to stop myself from thinking about it all the time. For the suffering and the anguish are not funny when you are having an attack.
Most epileptic bite their tongue and injure themselves. Rey told me that he had seen a case where someone had mutilated his own ear, just as I DID, and I think I heard a doctor from here (the mental hospital), who came to see me with the director, say that he too had seen it before. I like to think that once ......
Posted by: schizogirl, uk on 7:39pm Wed 14 Nov 07
It gives me hope to think that perhaps there is a reason for this and its not just me being nuts - i dont agree with the term integration disorder however as I always have been fully integrated... sometimes in my own wee world and sometimes in the real world. It makes the assumption that schizophrenics cant be integrated... which is just another stigma in itself.
It gives me hope to think that perhaps there is a reason for this and its not just me being nuts - i dont agree with the term integration disorder however as I always have been fully integrated... sometimes in my own wee world and sometimes in the real world. It makes the assumption that schizophrenics cant be integrated... which is just another stigma in itself.
Posted by: Rodrigo Portico, England on 8:59am Thu 15 Nov 07
This is considered a life-sentence, because for many - about one third of those diagnosed - that is precisely what it is! Your attempts to subvert what little continuing care is scraped together for us by adding further turmoil over identification and diagnosis, is what I find obnoxious about word-smith tinkering in medicine. if you seek a worthy object to attack, then try the welter of 'diagnoses' which proliferate when the clarity of paths to care and recovery are clouded for us, and we find ourselves being called borderline personality disorder or bipolar (??) and being deprived of any support, and further stigmatisation!
I must say that I would not be looking to Scotland for expertise, especially from someone who dismisses medication, the very reason for the need to distinguish one condition from another! Drop the label, and no one will be taking anything appropriate ever again!!!
I should point out that it is not the label that confers upon us second-class citizenship status, but the appalling Press that has assailed us over many years, PLUS Professionals who can gain a high profile by being outrageously callous and cavalier about the people they are making a great career out of nominally helping - Paul Hammersley - no one is talking about 'brain diseases'! we talk about chemical imbalance and proclivity to be vulnerable. Correcton - some people recover, but with uneven care and rehab/support, some simply re-enter a revolving door in perpetuity. Yes, removing the label will lead from bad roads of recovery to the worst possible prognosis, where no one can use and understand diagnostic distinctions, because CASL has succeeded in forcing us to talk in Japanese. And hallucinating does not simply consist of hearing voices. Maybe if you started listening to the Patients that are before you - and SEE THEM! - you would learn something about what schizophrenia is by those who have it. It is NOT a Concept, it is LIVED by Individual People. So Hammersley simply has his eye on the Money, and Moskovitch can go reclassify himself.
This is considered a life-sentence, because for many - about one third of those diagnosed - that is precisely what it is! Your attempts to subvert what little continuing care is scraped together for us by adding further turmoil over identification and diagnosis, is what I find obnoxious about word-smith tinkering in medicine. if you seek a worthy object to attack, then try the welter of 'diagnoses' which proliferate when the clarity of paths to care and recovery are clouded for us, and we find ourselves being called borderline personality disorder or bipolar (??) and being deprived of any support, and further stigmatisation!
I must say that I would not be looking to Scotland for expertise, especially from someone who dismisses medication, the very reason for the need to distinguish one condition from another! Drop the label, and no one will be taking anything appropriate ever again!!!
I should point out that it is not the label that confers upon us second-class citizenship status, but the appalling Press that has assailed us over many years, PLUS Professionals who can gain a high profile by being outrageously callous and cavalier about the people they are making a great career out of nominally helping - Paul Hammersley - no one is talking about 'brain diseases'! we talk about chemical imbalance and proclivity to be vulnerable. Correcton - some people recover, but with uneven care and rehab/support, some simply re-enter a revolving door in perpetuity. Yes, removing the label will lead from bad roads of recovery to the worst possible prognosis, where no one can use and understand diagnostic distinctions, because CASL has succeeded in forcing us to talk in Japanese. And hallucinating does not simply consist of hearing voices. Maybe if you started listening to the Patients that are before you - and SEE THEM! - you would learn something about what schizophrenia is by those who have it. It is NOT a Concept, it is LIVED by Individual People. So Hammersley simply has his eye on the Money, and Moskovitch can go reclassify himself.