I could have been more generous with my rating - this book was very well written and I think the author has the best of intentions. Hopefully it will go some way towards de-stigmatising 'schizophrenia'. However, as somebody who was diagnosed with schizophrenia at the age of 19 (I am now 51) I have serious reservations about the ideas expressed within it. Also, this review is taking me ages to write and I am trying to be fair, so please bear with me!
I feel as though the author uses 'so-called schizophrenia' (as he puts it) to make various points about what is wrong with the mental health system in this country and the USA, but that he never goes as far as admitting that it's a label which damages people. He could have used the platform afforded him by the publication of this book to canvas for its abolition.
Basically, the author states that ‘schizophrenia’ is a dubious diagnosis - there's no scientific test for it, or for any of the 'mental illnesses' in all the editions of the DSM (the psychiatrists' manual). He quotes those who truly understand the subject and are enlightened about the issues - Lucy Johnstone, Joanna Moncrieff, even J.D. Laing. He says there's a theory that we'd be better off as a society without any diagnoses. He points out that there is no evidence for genetic theories of 'mental illness' (i.e that these problems are hereditary) - he says that genetic studies are flawed but then he describes in detail one such study (which is, it turns out, flawed – so why go into it?)
In fact, although the author is meticulous about putting the various diagnoses within parentheses, or adding the prefix ‘so-called’ to illustrate that all diagnoses are simply concepts, I am not convinced that he actually believes this himself. It must be hard to disregard many years of training as a psychiatric nurse, and many more years of working in the field.
I enjoyed reading the case studies - but again, they were not a fair representation of the people diagnosed with ‘schizophrenia’. For example, there is no study of someone who has had psychosis and has completely recovered and now lives without medication. I know I am not the only example of this by a long chalk (it’s just that most people living ‘normal’ lives have the sense to keep quiet about past breakdowns!) In the past I have communicated with the author via his website (after reading his novel, The Shock of the Fall) and directed him to my own book (Surviving Schizophrenia, a Memoir) so he is definitely aware of my existence and could have used my case to illustrate that medication is not always the answer.
In my opinion, medications are only of use if the patient wants them (i.e. is not physically forced to take them) and is informed of all the potential side effects. The author of this book seems to think that they are crucial to control people and to keep them stable – although he does admit that there’s no long-term study to show whether people, in fact, relapse more often when they are on these drugs. He refers quite often to Professor Robin Murray, who comes across as a very understanding man who never diagnoses people with schizophrenia – I have to say, this is simply not true. I have met Professor Murray and heard him say – at a Rethink Mental Illness conference, to a room full of people diagnosed with it and suffering the consequences – that the term needs to go but that ‘we’ (the psychiatrists) ‘are not ready yet’.
The study of a mother of a young man diagnosed with 'schizophrenia' who killed himself, is sad in the extreme. The author admits that he found it impossible to discuss with the mother the matter of whether her son's childhood was a factor. He then seems to conclude that her theory that her son's dependence on alcohol was due to something being wrong with his brain and that this was somehow inter-connected with his mental illness, is probably as good a way as any to look at it. But as a reader of that story (and someone with personal experience of stigma from within and outside a family) I see things very differently. This child was taken away from his father in England, to live in the USA, and was brought up with a stepfather and his two younger half-siblings. He was (we can assume) the odd one out in a family, missing his father and feeling bad about him being abandoned...and yes, he smoked cannabis, took other drugs, drank alcohol to excess.
There's no one cause for 'mental illness' as the author concedes, but I don't think a difficult childhood can be discounted. I am not one to point the finger – I have four children and they might well suffer from emotional distress themselves at some stage in their lives, and if they do it will probably be partly due to having been brought up by a mother who has struggled with various problems over the years… But also, emotional distress is normal. It is part of life. We can’t sail through the world and be unaffected by the various problems we encounter. If we did, we wouldn’t be human. Which is why I prefer the term emotional distress to ‘mental illness’.
Another case study is that of a psychiatric nurse who himself hears voices and works in a prison with the ‘mentally ill’. I consider that to be equally misleading. The author mentions that being ‘mentally ill’ does not make you violent, and yet he goes on to write at length about prisoners who are ‘mentally ill’. I have a lot more to say on this particular subject, but this is not the place…
In fact, I could say a lot more about all of this. I think instead that I need to re-visit my second memoir, Surfacing, which was about my own recovery from ‘mental illness’. (Not to say that I am ‘recovered’ - I am still busy being human…) I was never satisfied with that book and I now have a lot to add on the subject, in the light of all I have learned in recent years, and hope that any insight I have gained might be of use.
Incidentally, I wrote both those books in my maiden name, Louise Gillett, and have only recently found the courage to put my married name, Louise van Wingerden, to them. My main reservation was that my children might be adversely affected by stigma – but I have realised that hiding my identity is not the way to educate them about this.
In any case, The Heartland is worth a read. The author does make some good points, including the one that fear is at the root of all 'mental illness'. He also recognises that poverty is very often a factor. I think he does have an understanding of the issues. Where he falls down is in his attempts to fit things into boxes – diagnoses, genetic theories, medication…these theories don’t hold weight, because emotional distress simply cannot be understood in those terms. He could work as a ‘researcher’ for years and not get anywhere – indeed, he might well do more good if he was back working on the wards, simply listening to people who need to be heard.
Incidentally, I know that I am biased to some extent, due to my own experiences of the mental health system. I know other people have difference experiences to my own, and will hopefully have a smoother ride through their troubles even within the current system.
So, to finish where I started – I am sorry that I could not give this book a five star rating. I do have my reasons.
Review by Louise van Wingerden author of Surviving Schizophrenia: a Memoir (written in my maiden name, Louise Gillett)
No comments:
Post a Comment