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.
Kerry Hudson: 'Mummy, Why is That Lady Talking to Herself?'
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.
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.
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.
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)
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.
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!
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.
but far more eloquently put by your good self.
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.