Schizophrenia - Stuck With It?

10/10/2014 09:06 BST | Updated 09/12/2014 10:59 GMT

Today is World Mental Health Day, and the theme is 'Living with Schizophrenia'. Unfortunately, as soon as I saw those words, I knew that they would not help the cause of those of us who are stuck with the diagnosis. It is the diagnosis itself that is the problem. The word schizophrenia stigmatises people and removes any hope of normality from them. Nobody sees any further.

Campaigns to lessen the stigma, however well meant they may be, are a waste of time and money, because they are simply fiddling around the edges and refusing to acknowledge the real problem. In the public consciousness, the word 'schizophrenic' equals 'dangerous lunatic' and the only way to change that is by changing the word.

I'm not exaggerating. As soon as I say 'I have been diagnosed with schizophrenia' people regard me differently. Even my friends, people who would once have laughed when I make a silly, funny remark sometimes wonder now if I am in fact a little mad when I make the same sort of comment. It's not their fault. It's the word and the connotations of it. It's also because we trust doctors and believe the truth of what they tell us.

The fact is, there is no objective test to judge the presence or absence of schizophrenia. The diagnosis is made on the basis of observation of behaviour. And schizophrenia is supposed to be a lifelong disease of the brain - so even though I have been well now for 14 years and I take no medication and have no symptoms of mental illness, my recovery will never be acknowledged by mental health professionals.

Look at it like this. Forget the 'mental' and just think 'illness'. I was ill, seriously ill, three times in my life. I was in hospital for three months on each occasion and took a long while afterwards to convalesce. But now I have been well for many years. I do not take medication. I am capable and active - I am married, with four wonderful children, a career and a happy, fulfilling life. Ergo, I am better.

Now, if I'd suffered from cancer, no-one would tell me, 'You are not better. You will never be better. You are a cancer'. But they tell me categorically that I am a schizophrenic. How can that be right?

Three years ago I wrote and published my memoir. I did so because I hoped that I could help others and that perhaps I could have some impact on how mental health is regarded. I hoped that if I explained how wrong and cruel a diagnosis of schizophrenia is, that the medics would listen, and something would change as a result.

Now, looking back, that attitude seems so naïve. I tried so hard. I gave evidence to the Schizophrenia Commission, I spoke at Newcastle University. I became an activist for Rethink Mental Illness and for Time to Change. I kept on believing that soon someone would understand the things I was trying so hard to explain - how a diagnosis of schizophrenia damages an individual, destroys their potential, sucks them dry of self-belief. That the diagnosis will affect that person throughout their life, it will stop them recovering, stop them even trying to recover. It will make them helpless and hopeless.

If the label was changed, so many people would be given hope. The only people who welcome the diagnosis are carers, for whom the word schizophrenia opens doors to the care and treatment they feel their loved one deserves. What they don't understand is that the people they are trying to help would be more able to help themselves if they were not labelled in this way.

I have only ever met one person who said that he was 'proud to be a schizophrenic' and at the time I was appalled. It was only later when I realised what he meant - that the diagnosis emphasised the seriousness of his illness and absolved him of responsibility for it. It signalled to those around him that there was no point in them trying to help, that he was beyond help and they should therefore 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, once.

To call someone a schizophrenic is just cruel. It is. The label of 'manic depression' was also unpleasant and demeaning, and this was eventually recognised. Manic depression was renamed 'bi-polar disorder' a term which quickly caught on, and now, thanks to the fact that such celebrities as Stephen Fry have confessed to having the condition, its stigma has almost disappeared.

Too many people still believe that schizophrenia is a useful, necessary medical term. But let me repeat - there is no objective test of its presence or absence. It is a notion, and a nebulous one at that. Many of the symptoms of bipolar and schizophrenia are the same, and the medications used to treat them are often the same too. Other mental health conditions are also pretty much indistinguishable from them both. Nobody, to be honest, can see inside anybody else's head with any degree of accuracy and find out what is going on in there. Nor does anybody have a crystal ball with which to predict the future.

To my mind, ideally, all diagnoses should be abolished. Personally, I would also favour the use of the terminology 'emotional distress' instead of 'mental illness'. It is a kinder, more understanding, less judgemental term. But the renaming of schizophrenia is a matter of urgency. I suggest the use of the term, 'Thought disorder'. It would make no difference to psychiatrists - they would still know what they were referring to. It would make all the difference to their patients.

In any case, after all this time - after joining Facebook groups, engaging in conversations on Twitter, attending mental health conferences, listening to debate and sometimes taking part in it, sometimes I start to think that nothing I can ever do or say will make a difference. Sometimes this makes me feel angry and powerless.

But then one day, during a meeting at the Rethink Mental Illness offices in London, I expressed my frustration to a civil servant from the Department of Work and Pensions. She told me she had known Lord Wolfenden, whose 1957 report led to a change in the law on homosexuality. She said that he had told her, 'Change is of the time' and she had never forgotten these words. And these words have come back to me repeatedly since, and finally I am starting to see the truth of them. Change in society happens when the time is right. I can't force it. I can only change myself, and my own attitudes.

I know that I am not a schizophrenic. It took me a long time to reject the diagnosis, but it was the only way I have been able to reclaim my humanity. And so, until change comes, I must appeal to anyone who has been diagnosed with schizophrenia to reject the term for themselves. It is the only way you will survive. Because the issue in real life is not so much, 'Living with Schizophrenia' as 'Living with the Consequences of a Diagnosis of Schizophrenia'.

Louise Gillett has written a book called Surviving Schizophrenia which can be found by clicking here.

She has written a blog, Schizophrenia at the Schoolgate, since 2009.