Thursday, 9 January 2014

Schizophrenia - it's a Syndrome!

I was prompted to write this blog post by an article I read in The Times this morning.  The article was by David Aaronovitch.  I know this is the second post in a row which has come on the back of a Times piece - and all I can say is that I am like this in real life too.  A lot of my usually rather inept conversation is an effort to put across something I have read in the paper.  Sometimes I say, 'I read in the paper yesterday....' but often I am specific about the fact that it was The Times.  Because otherwise it could have been the Daily Mail, or worse, and I don't see such sources as authentic and hope that others would not either.

I know that not everything written even in The Times may be an exact reflection of the truth.  But that paper does not just contain propaganda, it also has a lot of educated debate.  And the journalists don't seem to be gagged - their viewpoint is by no means pure Conservative, although it is the case that The Times is a Tory paper.  To wit: the front page on the day of the latest general election screamed - 'We can't tell you to vote Conservative - but we think you should!' 

Well - I don't agree.

Anyway, I suppose you get used to reading a paper.  A left-wing paper would probably annoy me more, because I doubt whether they would give a genuine airing to the opinions of others - and The Times does.  In fact, I remember a full page article by JKRowling - a very left-wing lady - that was published in 'my' paper around the time of the election too.

I like the journalists who write in The Times - well, I like most of them.  Some of them seem so fiercely confident that I would be absolutely terrified of them if I met them in person.  As a writer myself, I appreciate learning how the minds of other writers work, and because of the way that journalism is moving now, we are often given some insight into the lives of the writers.  For example, Helen Rumbelow's piece today about how she tried to wean her kids off sugar - or onto the newly recommended level of 5 teaspoons a day - made a really good read, although I was disappointed that she didn't succeed.  I had hoped that she would find a way to achieve the target and spur me on to do likewise.  I expect, like me, she will keep on trying, and I appreciate her honesty.

So.  I had a good morning reading the paper.  I am a bit under the weather, in that I have a chest infection, and it was good to sit quietly with a nice cup of tea and engage in some light intellectual stimulation.  Sometimes after reading The Times, if something has really piqued my interest, I go onto their website and join in with the comments of other readers, but today I thought I'd write a bit here instead.

Getting, finally, to the point: Aaronovitch wrote about 'Syndromes'.  He started by writing about Sudden Adult Death Syndrome, which as he pointed out, is a diagnosis of exclusion - if coroners have no explanation for a death, they accord it this one.  He makes the point that many medical and psychiatric diagnoses are 'diagnoses of exclusion' ('what is left when the doctors have excluded everything else') and that calling these things syndromes 'creates an impression of knowledge, not, as it should do, of a lack of knowledge'.

Aha!  So that is why the last time I saw a psychiatrist he said that schizophrenia is a syndrome. 

And then he went on to write about neuroscience, and how wondrous a subject it is, and yet what an early stage of understanding has been reached so far.  Leading neuroscientists, he said, are completely dismissive of diagnoses such as schizophrenia and bipolar disorder.  And he goes on, 'That doesn't mean that some of the drugs prescribed for those suffering psychotic events don't alleviate some or all of the symptoms.  But quite often we don't actually know why.  And sometimes it turns out that a drug has no greater effect than a placebo'.

Aaronovitch goes on to say that this is partly because of 'Big Pharma' and partly because we and our families so desperately want to have an explanation for suffering.  We want to know what is wrong, we want certainty.  Hence the creation of 'syndromes' - Chronic Fatigue Syndrome, Gulf War Syndrome and so on. 

So: 'Syndrome' is a term for those things that may have all sorts of causes, all sorts of symptoms, all sorts of potential cures.  We need to be honest with ourselves about the fact that sometimes we just don't have the answers.  That leaves open the possibility of future growth in our understanding.  But in the case of schizophrenia, whether it is now classed as a 'syndrome' or not, when the term becomes so damaging to the future of the patient it is really time to coin a new one.

I didn't just get the urge to write this so that I could repeat everything another writer has just published, with a healthy appendage of inverted commas.  I wanted to add my own personal experience to the debate - because when Aaronovitch wrote that we don't know why anti-psychotic drugs sometimes work, I think I know why they did - or seemed to - in my case.

Each time I had a breakdown I was given a huge cocktail of drugs.  I am sure that everything was tried in turn.  Eventually I calmed down, and this was attributed to whatever drug I was on at the time.  That is the simplistic explanation.

But I don't think it was just about calming down.  Towards the end of each of my stays in a mental hospital - for the last ten days I was there - I was given a small white pill at night.  A sleeping tablet.  This, combined with the progress I had already made, enabled my brain to finally switch off and for me to further recuperate.  I was not given any of this sleeping medication to take home, but I did have to take the anti-psychotics for a long time after I left the hospital - as has been documented elsewhere...

Even that is simplistic.  I am not ungrateful for the fact that I was taken to a safe place, fed, and that some people there endeavoured to help me.  I try not to be resentful of those who were unkind, and for the cruelty of practices such as forced medication - but I will always insist that none of this was helpful. 

And I particularly remember my final breakdown.  I think there are lessons to be learned from that.  There was a lot at stake.  For a while my baby daughter had been at the hospital with me.  Then she was taken away - just as I came out of a ward round in which the psychiatrist told me 'We are not going to take your baby away'.  (What a bare-faced lie.  Astounding). 

She went off to live with her Dad - now my husband - and came back to me about three weeks later.  I knew that I had to hold on to her, because otherwise we would both be lost.  I knew that the doctors did not consider me to be well.  And then I had a meeting with a doctor at a time when, mercifully, I was lucid.  (This the thing with psychosis.  You are not psychotic during the whole of the episode.  You drift in and out of it).  Anyway, he said that they were trying one last drug.  It was the last resort, the only thing they had left to try.  It was very expensive.  It was called Quetiapine, and the brand time was Seroquel.  Thankfully, I listened to him and I understood what he was saying.  I knew what was at stake.

Well.  A nurse gave me the tablet and a glass of water.  I was back in the mother and baby unit by that time.  I sat on the edge of my bed, my daughter asleep in her pram beside me, looking at the pill and the water.  And I thought - this has to work.  This is my last chance.  If this does not work, I will lose her forever. 

So that is why it worked.  Because I understood that it had to.  And I had the choice - nobody shoved that tablet and water down me.  I picked it up and swallowed it.  And I knew it had to make me calm and to keep me calm.

And - this is stupid, I know - the name of the medicine helped.  Quetiapine.  Quiet.  Seroquel.  Sequel.  I kept repeating it to myself. 

Quiet.  Sequel.

I still don't think that the chemicals cured me.  I think my desperation did, or my determination, or whatever you want to call it.  And maybe there was a dash of self-hypnotism involved.

That's that for now.  I know a lot of it has been repeating things I have said here and elsewhere already, but I hope it may be useful.  In the case of emotional distress, no matter how severe, it really is true that if you believe you will get better, you have a much higher chance of that happening.  It is possible to make a full recovery, even in the most extreme cases of mental breakdown. 

That's why I wrote the book, that's why I continue to put myself out there as a poster girl for recovery.  (Poster woman, in fact.  I will be a poster pensioner soon enough - but I hope we will make some headway with psychiatric treatment before that day comes.)

I should probably have written this on The Times online comments under David Aaronovitch's article, it would have got more readers.  They won't let you link to blog posts on there though.  And, truth be known, I am still a coward.  My Times account is under my real surname, and although everybody who knows me personally knows all about my history, and my photo is on the front of my book and in lots of other places now, the world at large does not yet know my real name. 

I may take that final step soon.  The only thing that holds me back is that I have such a distinctive surname and I have four kids and I don't want to embarrass them any more than I have already done, or to stigmatise them as the children of a 'schizophrenic'.  But this is all so important that I may have to 'come out' properly one day.  It would make publicising the cause so much easier.  And it probably would not be a big deal at all, to anybody except for me and my family, who are (or will soon grow to be) more than capable of understanding the importance of the issues involved, even though many other people in the world still seem not to be.


  1. Excellent post. I do believe that real change happens in mental health when our backs are against the wall. You've illustrated that very well.
    Happy New Year!