What's in a Name?

So, on Tuesday (it seems like longer ago) I attended a talk at Bournemouth University given by a nurse called Ciaran Newell, who specialises in treating eating disorders.  He spoke about labelling as it relates to stigma and discrimination, something he says he has personal experience of, being a) a male nurse, and b) Irish. 

He was an eloquent sort of chap (I suppose it would not be PC to speculate here on whether he has kissed the Blarney Stone.  I wish I could kiss the blarney stone, come to think of it...  I wonder where it actually is?  Does it exist, or is it just one of those expressions?  Anyway...)

The talk was interesting enough.  It marked the end of Mental Health Awareness Week at the University, which is a whole programme of events around World Mental Health Day, a commendable enterprise.  I attended a talk during the same programme last year - Minette Waters, the author, gave a talk relating to the charity work she does with the criminally insane (what an awful expression that is!  I don't think I have ever written it down before - can it really be the correct term for people who have committed a crime due to illness?)

So.  Ciaran talked a little about the offensive nature of labels, but then said that on the other hand, labelling helps treatment and understanding.  I hate it when mental health professionals say that!

Labelling does not help anything or anybody.  I can't be any clearer about this.  Let's take the label 'Schizophrenic'.  It does not make any difference to the treatment - because the same medications are used as in bi-polar, schizo-affective, and other disorders.  Basically, when a patient suffers psychosis a cocktail of drugs are tried in an attempt to remedy it, until something works.  Sometimes, if after several years a medication is changed and a patient responds well, the diagnosis is changed as a result.  Psychiatric treatment fundamentally operates by a process of guesswork. 

I am not making this stuff  up, although I would not blame anybody for thinking that I am.  There is a huge weight of literature on the subject of the complexity of mental health treatment - just take a look at the Mad in America website (link on the left hand side of this page) which will bust a few myths to say the least. 

(I am aware, by the way, that I may be preaching to the converted here, but I am hoping to have rustled up a few new readers recently and if there is anybody new here I want to point them in the right direction from the outset).

So that's treatment.  And as for understanding...  How can anybody possibly understand me better once they are told I am schizophrenic?  Surely it will just cause them to look at me in a different light, rather than accepting me as the human being they previously thought I was?  Not just me, obviously, but anyone.  There is no understanding of the condition, not even amoungst mental health professionals.  To them, I am schizophrenic.  Foolstop.  The fact that I have been on no medication for more than ten years and have no symptoms of mental illness, or any degeneration of the brain, counts for nothing - supposedly I am just waiting for the next breakdown.  And if it never comes?  That will prove nothing.  And if it does come?  Ah yes, then they were right.

I asked at the end  of the talk whether the speaker thought it would be beneficial to change the label of schizophrenia, and he replied that it certainly had helped to reduce stigma and discrimination by changing the name 'manic depression' to 'bi-polar disorder' but that 'Schizophrenia isn't quite there yet'.  I didn't quite understand what he was trying to say, but another member of the audience (who I have seen before, I think he is a member of the University staff) jumped in then and said that there is currently a move to change the diagnosis to 'thought disorder'. 

Now, how much good would that do?  How many people would feel that they have been given their lives back?  'You are not schizophrenic, you have a thought disorder'.  What a huge relief that would be.  Even for me, who maintains that I don't care what I am called, because the fact that I manage without medication and don't have any symptoms of mental illness is enough proof that I am not schizophrenic, even if the medics still insist that I am. 

Truth is - the label still hurts.  Nobody is that strong that calling them a lunatic, and saying they will always be one, wouldn't hurt. 

I don't want to diss Cieran - I was embarrassed after the talk because I had asked a lot of probing questions at the end.   I didn't want to show him up, but I just think this kind of stuff needs to be properly understood.  And what better opportunity could there be than during a talk about labelling?

Cieran demonstrated a high level of understanding - he spoke of how a label impacts on the identity of an individual, and can block self-realisation.  He spoke about how the individual with a label can adopt the characteristics linked with that condition.  That is exactly what happened to me during my day hospital days - I was taught what to expect from life as a 'schizophrenic' and I conformed, because by being compliant I was protected (I gained housing and state benefits, I had a place to go every day). 

Cieran spoke about how the labels can cause social exclusion because you feel unable to tell others about your condition, and then because you are forced to hide you always feel at risk of being found out.  Again, spot on.

But - he said then that this sense of shame and the resultant not-telling, was an 'adaptive response'.  He said that the fault in stigma lies with society, not with the individual.  What he failed to recognise - because he doesn't have the label 'schizophrenic' - is that not-telling is a necessary response to extreme labelling. 

Why should you tell the world that you are a 'schizophrenic'?  Because it makes things easier for others in the same position.  But in doing so you are making a personal sacrifice of yourself - of your own standing in society, perhaps compromising your family, perhaps as a result losing your hard-won peace of mind.

I do it, because I am lucky to be in a position of strength - on the days when it all gets too much I can hunker down with my family, who thank God don't see me as a 'Schizophrenic'.  Just take a few days to re-gather myself.  But I wouldn't recommend it to others.

Apart from anything else, when you stand up and say, 'I'm a Schizophrenic - but I'm better now' (knowing that this does sound mad, no matter how sane you try to look)  you are not holding out any real hope for other people.  The mental health professionals won't acknowledge that I am better - so why on earth, I wonder at times, did I ever expose myself in this way? 

I mentioned the anomoly to Cieran - that recovery from schizophrenia is supposed to be impossible without medication and yet I don't take meds and the professionals still won't accept that either I don't have the illness or that I am recovered. Another member of the University staff said that some professionals see schizophrenia as a relapse/remission syndrome - but that all of us are equally at risk of having a psychosis some time (and this was meant kindly - the implication was that therefore I should not take it personally). 

But there is a big difference between a general concept of being at risk (which would not impinge on most people's consciousness - we are all at risk of everything all the time, and we have to ignore that fact in order to function in our daily lives) and being told by professionals that you should never consider yourself mentally well because you have a brain disease that you will never recover from.  Psychologically, there is all the difference in the world.  It takes an effort some days to convince myself that I am sane - even though I am clearly not insane - because of the darned label and what they tell me I should expect from my life and from myself.  How can I expect other people to believe that I am normal under this sort of stigma? 

This is why when an enlightened mental health professional like Cieran stands up and makes enlightened statements like, 'Diagnosis can make what is transient, permanent' (a quote from Burke and Porter) or explains the faults in service provision, as he did, I can't be simply grateful, I have to keep pushing for further understanding, proper understanding. 

Yes, a diagnosis of schizophrenia can, as he points out, open the door to all sorts of services and provisions (even ensure that one is fed and housed, as I was).  But it sucks the soul out of an individual.  It makes them fear themselves.  It even makes them fear recovery (because if that happens, by some miracle, one will no longer be fed and housed, and then how will one survive in the world?)

How exactly is one suppose to survive as a schizophrenic in a world of human beings?  One is not allowed to recover - you are told that recovery is impossible, it is a lifelong condition, and you need to take medication for ever (regardless of the impact that medication has one your health).  Recovery, if it does occur, is not acknowledged - the label stands.  You must learn to live with that label - it is society's problem, not yours, apparently.

Would you employ a schizophrenic?  I don't know that I would...

Ciaran does have insight - he proposed solutions to the problem of labelling, which included re-education, use of the internet, of peer support and advocacy.  But that is just tinkering around the edges of the problem - the label itself needs addressing.  Nothing else could make as big a difference to the actual living of lives - nothing could be kinder - than simply to remove the stigma from our shoulders.  'You are not schizophrenic.  You have a thought disorder'. 

Job done.  Then people who have experienced the problems will feel more able to speak freely about the condition, the symptoms, the risk factors.  Then young people can be educated on how to be watchful for the signs, how to guard their mental health. 

I did not mean to heckle Cieran - on the other hand, I really wanted to educate those students.  (The room was packed by the way - perhaps a hundred people in the audience, in contrast to the event I attended last year, which had perhaps ten, and far more than the thirty or so I spoke to in Newcastle).  Of course, Cieran's field of expertise is eating disorders, not schizophrenia, and so I suppose I couldn't have hoped that he would understand the impact of the diagnosis that I have.  I should not have taken it personally perhaps - but throughout his talk he constantly referred to schizophrenia, and in the end I found that I could not stay quiet. 

I didn't know quite why I have felt so teary and vulnerable for the last couple of days, and why my self-esteem had suddenly plummeted.  Now, writing this, I am beginning to understand.  It has been an emotional time since Tuesday (it wasn't easy standing up and announcing that 'I have Schizophrenia' to a room full of people who were there to listen to somebody else) but I feel better already.

Writing helps, as I have been saying for a long time.  If you are new to this blog, and have suffered emotional distress or are still battling with it, try writing down how you feel about it all.  You don't have to show anybody what you have written, but just try it and see.  It helps.  The tears may come (tears of self-pity? of anger?) but afterwards you can re-read what you have written, and you can feel proud.