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Dr. Sohom Das

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Re-Branding Schizophrenia - Would Changing the Name Make a Difference?

Posted: 28/11/2012 00:00

What's in a name?

I have read with interest the recent report published by the Schizophrenia Commission, sponsored by 'Rethink Mental Illness', which analysed the current state of the treatment of schizophrenia in the UK.

Below is an interesting extract, relating to the term 'schizophrenia' and debating whether it should be replaced:

"We recognise that many people given the diagnosis of schizophrenia and indeed many working in the services would prefer a less stigmatising alternative to the current term. Indeed, we heard from many who believe that there is so much misconception associated with the term schizophrenia that it has lost its usefulness. We empathise with this view and share the sense of disempowerment resulting from the term's unfortunate and inappropriate connotations... However, the call to abolish the term schizophrenia is not unanimous. This is both because not everyone feels so negatively about the term... without greater consensus on an agreed alternative, and a better understanding of causes and remedies, a new term will not in itself deliver an improvement in attitudes."

The report itself highlights that opinions are polarised. I suppose I was initially sceptical.

I thought it was a simplistic way to approach an intricate issue. If some people judge, distain or demur at those who suffer from this tragic disorder, it's probably their own ignorance and attitude that needs to be addressed. I'm not sure that changing the appellation would resolve this. Those who cringe at the S-word I suspect would eventually discover its successor (probably from reading the Daily Mail), and react similarly to the new name. In the same way, a homophobic person's pathology lives within them. I doubt changing in the terminology would improve their attitudes. Bigots are bigots.

Only education can combat ignorance, and only exposure can combat attitudes.

It amazes me that some Philistines still believe that schizophrenia is 'split personalities'. If you subscribe to that egregious fallacy, please read my prediction at the end of this blog ("What is that schizophrenia?"), and let's never speak of this again ...

I was impressed by the report's novel suggestion of focusing on mental health education in the school curriculum; this could reduce inchoate ignorance and stigma. Influencing the malleable minds of the young is easier than for us ignorant adults. Hopefully it will instil confidence within these kids to seek help if necessary, for themselves and for their loved ones in the future. I'm glad to hear from my wife (enthusiastic psychology teacher daily, reluctant blog editor occasionally) that 'Rethink Mental Illness', the very charity that sponsored the report, have been distributing information leaflets at her college.

"Mental illness is nothing to be ashamed of, but stigma and bias shames us all" - Bill Clinton

Though many people (45% according to the report; higher than previously promulgated) recover after one episode, tragically, it burdens a significant cohort for their entire lives, and is classically described as "remitting and relapsing". What must it be like to have the salubrious misfortune of paradoxically losing touch with reality, of being hospitalised, of having your family, personal and professional life, ripped off its trajectory and thrown into turmoil? What must it be like to have to take medication, with potentially unbearable side-effects? What must it be like to have to witness this happening to a loved one? Personally, I imagine that after surviving all that, I'd feel patronised if an authority tried to rename my experience, and suggest that this would palliate it. Pain that is not called pain still hurts.

I've recently spoken to a few patients who have schizophrenia. One young man's words were particularly poignant; he told me that the very word spurts painful and embarrassing memories of rueful events. He said it sent shivers down his spine. He relayed to me that he acknowledges that rebranding schizophrenia won't to change his past vicissitudes, or make his future any easier. But it would help him feel like he has been given a clean slate. Some of my colleagues (psychiatrists and otherwise) feel that a different name can afford patients a more positive framework, to focus on their recovery.

I must admit, I'm not fully convinced either way. But I think a chat with my patients swayed me somewhat. I felt humbled by their attitude. After all, they have lived it. Life trumps observations every time.

What Is Schizophrenia?

Schizophrenia is often mistaken for 'Multiple personality disorder' (also known as 'dissociative identity disorder', or more colloquially as 'split personality'). The latter does exist as an entity, but is extremely rare. Most psychiatrists don't see one of these in their career. I've only ever seen one (or two, whether you see it from my or his point of view).

The term Schizophrenia (literally "split mind") was coined by Bleuler around a century ago. It is not one disease; it's more of a syndrome, with several disparate, complex incarnations. It occurs in 0.5 to 1% of the population, and usually presents around late teens or early 20s. It has obvious symptoms (known as positive symptoms) which include hallucinations (most commonly hearing voices) and delusions (often paranoid in nature, such as a strong belief that others want to hurt you).

Less distinctive symptoms relate to social withdrawal and lack of motivation (known as negative symptoms). There are other rarer symptoms, such as 'thought disorder' (a disconnection in the flow of thoughts, making speech jumbled, confused and random). There may also be an 'affective component' related to mood (e.g. a depressed mood, or irritability, or uncontrollable excitement). The combination of symptoms vary between people. As does the impact it has on their lives.

 
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03:51 AM on 12/29/2012
Haha, I'm writing this...because I am so alone in the truth... imagine that the word God, in lettering, appeared on a mirror in front of you. You were freaked out, excited, bewildered. You ran to your closest friend or family member to explain….and they didn’t believe you, they looked at it but could not see the image itself or were unable to believe it was there…but then if they did not see it, why did they take their hand to the mirror, wipe the word itself away…and tell you it was all in your mind. This is what happened to me.

I would like to describe to you what my hallucinations are like. They are first absent of delusion, because I am now more open-minded and I do not fall into traps of deluded thinking like many Americans do. I sometimes hear, or assume, there’s a voice in the back of my mind that will give me a sentence of advice, then leave. It feels more like what you would call “my voice of reason” but I like to imagine that he is wise…he is often silent. In the hospital, I saw sadness, gloom, lobotomies before I knew of what that meant–came in a very vivid dream depicting a doctor trying to get the establishment to warn a patient of significant white blood cell loss//fatal. So what does the word schizophrenia mean to me? The opposite of what I have overcome.
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wakyracir
My spaniel is watching you
12:59 AM on 11/29/2012
Just a hunch, but I'd like to see more research on possible links between religion and schizophrenia. Are there psychological dangers inherent in encouraging vulnerable people to believe in any superstition, whether this is a popular movement or a historically established "state" religion? Surely the effect could be to draw those already at risk even further from reality?
09:17 AM on 12/01/2012
LIke with anyone, if someone hears voices or has similar experiences like visions there is bound to be added interest into whether these reveal anything paranormal. It makes it more difficult for people with these experiences to contain and come on terms with such experiences - locating them within themselves when the experience tells them it is a real voice talking to them. This is what is so disorientating about schizophrenia. You can no longer trust your primary senses to tell you what is real against what is illusory.
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12:34 AM on 11/29/2012
A change of name along with information does seem to work. The two instances that come to mind was the re- naming of 'The Spastic society' to 'Scope'. The education being that people suffered from cerebral palsy and were not so called 'spastics'. That to call someone spastic was incorrect.
Disabled people being called spastic or 'spasmo's' in now hardly heard.

The other case is that of insisting, through media and advertising, that people suffer from Downs Syndrome, they are not Mongols as was previously used to describe this disability. You rarely hear the word Mongol now.

As long as the name change comes with information and education, then it can make people more aware, more understanding, and lessen any stigma.
11:28 PM on 11/28/2012
Think they should change illness name Depression if any. As people think it's just an illness about being down in the dumps and not that severe (just the same depression which many normal people feel without illness from time to time) You don't have to be unhappy to get it or have crying spells.
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12:43 AM on 11/29/2012
I couldn't agree more. Also there are too many pills being doled out for 'depression'. Heck if you look at the list of symptoms of depression, then most of us would be deemed to be depressed. Break up with the boy/girl friend? Oh I'm depressed I need a pill.
I am not taking away the fact that some unfortunate people are clinically depressed but a lot of people want anti-depressants as some sort of panacea, they want a happy pill.

What ever happened to the lovely old word 'Melancholia'? Apparently it was very prevalent in Renaissance times, especially among artists. Said to have been 'fashionable'. Things never change lol.
09:22 PM on 11/28/2012
What is worse about the stigma attached to schizophrenia and other mental illnesses is that we are seen as weak. Truth is a so called normal person couldn't deal with what we have. THere just needs to be more education about the subject. THis article and articles like not only help people like myself but people don't understand what we go through. Just today I went on my walk and saw some people out. I thought they were talking about me negatively. I came back inside after my walk, read the article and felt better about my situation.
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Barbara Longstaff
08:47 PM on 11/28/2012
Schizophrenia is what it is why change the name people do not seem to mnd but changing it's name would make them think about it again. Leave well alone. Tablets do keep it in check. Educating peole as to what it really is would be much more useful.
09:10 PM on 11/28/2012
This term has been with us for over 100 years. No one in nordic or germanic countries can see the slightest offense in the term. It is like we have some sort of pathological phobia about non-anglicised terms. We bristle as if it was a brand-name for a jack-boot!
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Barbara Longstaff
10:31 PM on 11/28/2012
You may bristle but I do not, Schizophrenia has been with us for a long time now nd peole got used to it like in my days if you could not sit still you had Sirvisus Dance, which nowadays is classed as Hyperactive. I think Schizophrenia is more accepted now as in yeas passed when you were considered mental and put in an asylum.
05:48 PM on 11/28/2012
Whatever you call it, sooner or later it would become stigmatized again ( just like Windscale and Sellafield - it was still a nuclear plant!). Evading the issues doesn't help. Education is the key as in all things that are misunderstood. Being more open and talking about all mental health issues is the only way to go. It's ridiculous that if someone has a broken limb we will all discuss it and feel sympathy or even empathy for the sufferer but for someone with a broken mind there's rarely the same response.
05:01 PM on 11/28/2012
Many people suffer with this condition. I beleive its mis-construded to adhere itself to the "less advantageous of society". Its more in control when you have the warmth of a family and a warm home, a profession and healthy bank account. Drugs and drink are major factors of the condition, only enhanced when on the street. If everyone were to be drug tested, how many would really pass. Street or Mansion. Pilot of Road Sweeper. I think the re-labelling would benefit the professional, the man on the street he's not bothered what its called.
04:41 PM on 11/28/2012
Changing the name doesnt change the condition, educating people as to what it really is would be more useful.
12:51 PM on 11/28/2012
Well, having been 'classicaly' trained in the psychiatric care environment I can honestly say 'yes', as it gives the totally wrong impression of an individual suffering with such an illness. 'Labelling' as its referred to, serves very little purpose as it groups people together by condition rather than focusing on the individual and their needs. From a diagnostic and treatment point of view though, there does need to be some way of categorising symptoms. I cannot remember them all now, but at one time there had to be 20 clearly defined symptoms present before this 'label' in question could be assigned to a sufferer.
I have often seen this condition classified as a 'disassociative disorder'... still a label, but much more non descript and less scarey to the man in the street :o)
08:58 PM on 11/28/2012
A term to fit the descriptors of schizophrenia

A layman's term to cover the intricacies of the diagnosis of schizophrenia is Detachment disorder.
While this might not convey the seriousness of our conditions, it does present the diagnosis in an everyday language which would take the stigmatising sting out of schizophrenia.

This reminds me of an homogenised translation of the story line 'Fe, Fi, Fo, Fum, I smell the blood of an Englishman!' which became 'I smell fresh meat' ! Maybe we should have an online Poll so readers can indicate their preferences on a change in terminology.
01:43 PM on 11/29/2012
I think we fundementally agree?... In as much that any terminology will become a label. My real point, which I feel got a little lost was... That each and everyone should be treated as an individual, based on their own merits, and not to be bundled up together with a broad spectrum banner attached.
03:02 PM on 12/05/2012
Hello! Elek! Daddy! :-)
11:32 AM on 11/28/2012
I grew up with a mother who had schizophrenia. We had a terrible time, because she was violent, but she had a far worse time. Trying to get treatment for her that was caring and considerate was a nightmare. She was treated dreadfully and so was my father for fighting for her! Eventually, after many years on drugs of one sort or another, none of which ever brought her to any degree of normality but reduced her to a zombie like state, she succumbed to dementia. Then she didn't know who any of us were. My father nursed her for over 40 years. Only in the last three years of her life was he offered any caring respite care.
Twenty years after her death, I can still remember the torment they both went through. Two lives ruined because nobody seemed to know what to do except throw her into an institution and give her electric shocks or medicate her into a trance.
I hope that today people with this dreadful illness get the treatment they deserve. My mum and dad certainly did not deserve whet happened to them!
09:02 PM on 11/28/2012
A condition which merits 23 percent as a proportion of funding per capita against physical ill health, gets a mere 12 percent. NHS cares not about mental ill-health. It should be Made to care.
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inoilfieldhell
Working myself to death.
10:36 PM on 11/27/2012
My wife has been hospitalized with it twice since we have been married. Each time it was in conjuction with severe difficulties with her family, making it stress induced. Last time, it was very difficult to get her help. The state and county would not listen to me when I told them she needed help. Now, she has to stay on the AAP drugs to insure against relapse. If she did relapse, I may never get her back again, due to budget cuts in mental health.
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Barbara Longstaff
12:47 PM on 11/28/2012
The Giovernment seem to have enough money for overseas aid though when charity shoiuld beginat home. The Mental Health Society should press this point to the authorities. We need the money here for our own people not abroad.
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realitytrumpsbull
Two 'alves of coconut!
09:55 PM on 11/27/2012
Also, what progress in using pot, marijuana, as a mental health therapeutic aid? Could it be that some of these people just need to go visit Amsterdam, get laid, get high, drunk, sleep, etc.? Insomnia's a modern-day illness that's becoming more common on account of all this computer-stuff we have these days, and the TV, and light/noise pollution, and people working ungodly hours and and and. How many of these 'schizophrenics' have had some kind of work-related breakdown, stress etc.? Stress kills...so do people that are under too much of it, or have been under too much of it.
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Ian Rennie
It irritates people that I'm a librarian :)
01:58 PM on 11/28/2012
cannabis is a severe aggravating factor in schizophrenia. It makes psychosis in schizophrenia considerably worse. I would be very happy to provide you with the articles that show this, although you can find them for yourself by going to Google Scholar and entering cannabis and schizophrenia as search terms.

Please don't reduce schizophrenia to just stress. It is no more just stress than depression is just sadness or a coma is just sleep.
04:47 PM on 11/28/2012
What I wanted to say, having personal knowledge of a young man suffering manic depression and schizophrenia through use of cannabis ,
but far more eloquently put by your good self.
09:18 PM on 11/28/2012
People with this condition are largely - and should be blameless for the accident of their condition. Constantly harping on about self-abusers as if they fit this context just adds to the pain and stigma. It is as bad as the government characterising claimants as 'scroungers'. Just so wrong and inappropriate. Every time someone mis-construes all this I feel Wronged!
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realitytrumpsbull
Two 'alves of coconut!
09:46 PM on 11/27/2012
Maybe it's just DILLIGAF syndrome, and not schizophrenia. Modern life isn't 'all that', what happens when people have had too much of it, and go their own way, mentally? Things have gotten pretty regimented and organized, anymore, if someone's not living up to their government-approved/directed life potential, does that make them 'crazy', or a 'victim'? Think for yourself, now, before it's too late. Just because it's printed in a book, or comes out of the mouth of someone wearing a white coat, doesn't mean it's the Gospel From Upon High. Un-label, re-think, and re-evaluate.    The only way to really maybe try and find out what's wrong with somebody, is to actually sit down, and talk to them. if someone is behaving strangely, maybe it's because they've been through some kind of stress or trauma, maybe it's because they are not eating well (!!!!), maybe they are just in the process of having a shippy life and are currently facing some serious challenges or unexpected problems, disappointments etc. Sometimes, it takes a while to process certain things. Adult life in these increasingly crowded times isn't all it's cracked up to be, and sometimes our wonderful society frankly isn't. Unfortunately, it's the only one we have and we have to learn to adapt as best as humanly possible, which sometimes yields imperfect results at best. People are people, they have feelings, they have personalities, they have their limits, thank god we're not all exactly the same or 'normal' or whatever's in that book, there. Prescribe a brisk walk and a change of scenery, and a good meal. Might be better than any pill in any bottle on that shelf, come right down to it.
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Ian Rennie
It irritates people that I'm a librarian :)
02:01 PM on 11/28/2012
Replies like this demonstrate how little people actually know about mental illness. While environment obviously has an impact, the impact it has is usually aggravation or amelioration of root causes. A "brisk walk" won't help someone with schizophrenia and more than a nice cup of tea would help someone with type 1 diabetes.
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Kath Forsyth
04:55 PM on 11/28/2012
Replies like this leave me shocked and saddened at the lack of knowledge about mental health. I can only assume they have not had any interactions with people suffering from schizophrenia, or they would realise it is a life changing illness that often has disturbing symptoms for the sufferer and their family. I think mental health education in schools is an excellent idea and would like to see mental health charities encouraged to participate too.
09:32 PM on 11/28/2012
[I would love the opportunity to interact with people on this topic. Society's pronouncement is that it remains taboo!]
Anyone who has lived with symptoms of schizophrenia for a considerable length of time will recognize the perspectives given here: the diagnosable symptoms of sz may be incurably lodged within us and May be a part of our make up, but that does not in itself present a grim or hopeless predicament. This is because our disabilities are also our Attributes. Maybe unwittingly, the psychiatrist's diagnosis undermines these attributes and sets them in a grim light. But really it is a matter of impact, intensity and degree, whether we languish in despair or set about engaging the symptoms as evidence of rare qualities which mark us out as having gifts to be expressed and applied creatively.

What I am saying is: with the right help, a low maintenance dosage of appropriate medication to reduce the intensity of symptom's extremes -one which does not pile on a burden of disability which excessive medicating is apt to do- and some vocational and training guidance, we can be the creative artists that nature intended us to be, using our gifts to master the medium which is best suited to our attributes.

My 'pathway to progress' has been photography. I find that a modicum of seeing things which 'are not there' enables me to apply a creative imagination to envisage the imaging possibilities of any scene I encounter and reproduce that on camera.