Schizophrenia - Stuck with it?

Well, it is still the summer holidays but the weather has changed dramatically - it is damp and drizzly to say the least.  I took the kids to the beach today and we got caught in a bit of a downpour.  Luckily we had a beach hut to shelter us, but even so it was a wet experience. 

Since the weather has not been good we have been at home more over the last few days, so I have tidied up the house a bit and bought some school uniform, new shoes and so on for the kids.  It's probably better this way - the poor weather gives us a chance to drag ourselves away from the beach, wind down from the holidays and gear ourselves up for the new start of term.  I am looking forward to re-engaging with the world as an adult - to getting on with my writing and back to the conversations on Twitter and Facebook which help me publicise my work but also help to connect me to the wider world.  In fact, I logged into Twitter yesterday, although once I was there I wasn't sure what else to say, apart from 'Hi, I'm back'.  Which one lady, very sweetly, favourited. 

So here I am on my blog.  This time I do know what I want to say.  I want to write a bit about the diagnosis of schizophrenia.  I've written about it before, several times, but I need to write more, because there's a feeling of injustice and frustration that's been building in me recently.  I sense that the diagnosis is not going to go away - not for me, not for any of us who have been lumbered with it.  It's a disaster, the diagnosis. 

World Mental Health Day this year is about 'Living with Schizophrenia' - and as soon as I knew that, I knew it would not help.  It is the word itself that is the problem.  The word stigmatises people and takes away any hope of normality from them.  Nobody sees any further.  The campaigns are all a waste of time and money - they fiddle around the edges and refuse to acknowledge the problem.  In the public consciousness, the word 'schizophrenic' equals 'dangerous lunatic'.  That is how it is, and the only way to change that is by changing the word.

I'm not exaggerating.  The other day I had a phone call from an organisation who were carrying out a survey on behalf of Public Health England.  They wanted to monitor the activity levels in our household and I was able to answer all the questions in a way that made me sound like a pretty good mother - yes, we swim in the sea, cycle, run, etc, almost every day.  I did admit that it is because it is the summer and we live near the beach plus I am currently on a health drive - we have not always been this 'good' historically. 

Anyway, by the end of the interview I was feeling quite good about myself.  But then the lad on the other end of the phone asked, 'Do you have any disability or long term illness?'  or words to that effect.  And I said no.  Because I don't - I am well.  But it left a bit of a bad taste, because in a way I was lying - officially I do have a long term illness, a disability even.  Or I am supposed to have.  Or something.  But I knew that I couldn't tell that boy on the phone that I have a diagnosis of schizophrenia - because it would impact on everything I had just told him.  He would assume that I was batty, and everything I had just told him would consequently be open to doubt.  Plus, I am not actually disabled or ill.  I know that, even if it is not publicly recognised by mental health professionals.  I am okay.  I just am!

But as soon as I say, 'I have a diagnosis of schizophrenia' people regard me differently.  Even friends.  People who might once have laughed at a remark I made, now sometimes wonder if I am in fact a little mad when I make the same remark.  It's not their fault.  It's the word, and the connotations it has.  It's also the fact that we respect physicians, and believe the truth of what they tell us. 

Look at like this for a minute.  Forget the 'mental' illness and just think illness.  I was ill, severely ill, three times in my life.  I was in hospital for several months each time and took a long while to convalesce after.  But now I have been well for fourteen years.  I don't need drugs, I am capable and active.  I function absolutely normally in every part of my life.  Ergo, I am better. 

Now, if I'd had cancer, no-one would say to me, 'You're not better.  You will never be better.  You are a cancer'.  But with 'schizophrenia' they do.  Even though there is no test for the presence or absence of this 'disease'.  How can that be right? 

I know I have banged on about all this before, and I know it's not going to change anything.  I'm just getting really frustrated about it all and it helps to sound off.  I caught myself wishing recently that I had never written my memoir, or that I had written it as fiction, or under a pseudonym.  But when I think back I remember why I did it the way I did - I needed to be open about the whole thing.  And that did me good; I don't regret it for that reason.  But where it went wrong was that I thought by being open I could help others, that I could have some impact on how mental health is regarded.  That I could explain how wrong a diagnosis of schizophrenia is, how cruel, and that people would listen and understand and change it as a result.

When I think back, that attitude seems so naïve.  For several years I tried - I spoke to the Schizophrenia Commission and to various other organisations through Rethink, I went up to Newcastle University and spoke to students there, did the same locally through links I established at Bournemouth University.  For all that time I thought that eventually someone would understand the things I was trying to explain - how a diagnosis of schizophrenia damages the individual, destroys his or her potential.  Sucks the self-belief out of them.  How that diagnosis will affect the person all through their life, stop them recovering, stop them trying to recover.  Make them hopeless.

I have explored all sorts of avenues through this over the years.  Anti-medication, anti-psychiatry.  I have met many fascinating people and interacted with many more over the internet.  But it's not all black and white and it never will be.  Many people in the mental health business genuinely want to help others, but are hampered by the system.  Still, we need some sort of system, some sort of help for the emotionally distressed.  I can come up with various theories as to how this should be done - I would suggest lifting them out of penury for a start, giving them some sort of security, some self-belief, a job...  Never hospitalising, never forcibly medicating... 

There's more, but what would be the point?  I can't change anything.  It's about human beings and their interactions, ultimately.  About what they should or shouldn't be allowed to do to one another, what is humane and what is not.  What is helpful, what is kind and decent behaviour.  In the name of trying to understand and improve the system I have joined Facebook groups, engaged in conversations through Twitter, been to mental health conferences.  Listened to debate, taken part in some of it. 

And here's my conclusion.  The quickest, easiest change to the system would be to stop labelling people with schizophrenia.  It would give many people hope where there was none.  I have occasionally met people who welcome a diagnosis of schizophrenia - usually carers, for whom this diagnosis opens the doors to the treatment and resources they feel their loved one deserves.  Those that they are trying to help though, would be more likely to help themselves if they were not labelled in this way.  I have only met one boy (he was in his late twenties, but still very much a boy) who welcomed the diagnosis for himself.  He said that he was 'proud to be a schizophrenic'.  I was appalled at the time, but when I thought about it later, I realised what he meant - the label absolved him of responsibility and emphasised the seriousness of his illness.  It signalled to those around him that there was no point in them trying to help, that he was beyond help and that therefore they should leave him alone.  He was not ready to get better, basically - but if he ever reaches the point where he is - when he wants to be part of society again - he will find himself hampered beyond belief by that label.  I know - I was the same.

It's just cruel.  It is.  This was recognised with manic depression - no-one wanted to be 'manic', the label was unpleasant and demeaning, so it was renamed bipolar disorder - which caught on quickly once it was 'endorsed' by various celebrities.

Too many people still think 'Schizophrenia' means something - that it is a necessary, helpful, medical term.  It really isn't.  And I won't go through it all now - I'm tired and I have a houseful of children at the moment, who require supervision (that's why the arguments in this post are so fragmented.  I keep having to leave the computer and tell them to stop chucking water bombs or to turn down the volume on the TV or refrain from squirting each other with the hosepipe.  There are too many of them to sit quietly and play constructively and anyway I suppose I should be glad that they are being active - I am just a little worried that it may all end in tears.  Probably the tears of my youngest child).  I will just say again that there is no test for schizophrenia, no proof of its presence or absence.  It is a notion and a nebulous one at that.  The medications for bipolar and schizophrenia are the same, many of the symptoms are the same.  Other conditions - or 'diseases' are also pretty much indistinguishable from these two. 

I am starting to see that I can't change any of that - that it may never change.  It makes me feel helpless and angry, but I know that all I can do is ignore it. 

I know I am not a schizophrenic.  I just do.  It took me ages to reject the diagnosis, but it is the only way I could survive.  Nothing else makes sense.  One day I will probably fork out a couple of hundred quid to have a professional - a private psychiatrist - agree that I am not mad, because none of the NHS ones will stick their necks out to do so, and I need that affirmation.  I shouldn't, but I do.  Being told you're mad is not good for your mental health.

Finally - anyone reading this who has been diagnosed with schizophrenia, please ignore your diagnosis.  At least two members of my family have done this.  Years ago they were told they had schizophrenia but they dismissed the notion and got on with their existence.  Now their lives are not damaged in the same way as mine.  They can be eccentric, maverick, alcoholic.  They can be as chaotic as they wish - but they are not seen by others as 'mad'.  (Nor should they be, they are human beings, and have a right to live their lives as they wish, as all people do).  I am a good mother, a teetotaller, honest, hard-working etc, etc.  I go out of my way to be 'normal' but the harder I try the more futile my efforts become.   And all because I bowed to what I thought was valid medical knowledge from mental health professionals and accepted their hateful pronouncement on the validity of my self.

Bah!  Grrr!  And other pointless protests! 

Anyway - on the bright side, I have nearly finished the recovery book (yes, I know, I have been saying that for years). It has just occurred to me that I if I really pull my finger out I could launch it in time for World Mental Health Day, which could be useful. 

Because in real life the issue is not so much 'Living with Schizophrenia' as 'Living with the Consequences of a Diagnosis of Schizophrenia'.