I am upset today. I’ve been a little emotional for the last few days, actually.
I attended an online mental health workshop event on Saturday which unsettled me. Don't get me wrong, the workshop was wonderful. All the best people, in my opinion, are against the traditional mental health outlook and the speakers on Saturday were some of the best of the best. PCCS books, who publishes all the author speakers, deserve a huge shout out for all the great work they do. They look at the issues in terms of emotional distress, not mental health, which is the only humane vantage point.
Another speaker was Joanna Moncrieff, who has written 'The Straight-Talking Introduction to Psychiatric Drugs - the truth about how they work and how to come off them.' And finally, Mary Boyle and Lucy Johnstone told us about their book, 'The Power Threat Meaning Framework - an Alternative to Psychiatric Diagnosis'.
All of these authors have really valuable insight into the failings of our current mental health system and brilliant ideas about how it can be improved.
So why did I feel unsettled? Because I realised during the course of the day that I haven't got over my diagnosis of schizophrenia, and I know I need to. Or maybe I don't - perhaps the sense of injustice I feel about it will prove useful, if it helps prevent others from being diagnosed in the future. In the meantime though, I am still distressed about it, even though I know it is meaningless in my life. I'd like to be calmer and more philosophical about the issue and sometimes I think I am - and then something happens to make me realise how much it still affects me.
The diagnosis undermines people in so many ways. It undermines a person's credibility...are you to be believed? Are you to be taken at face value? Or are you a schizophrenic? It goes to the essence of self - if you are to believe this assessment of yourself, you are no longer a human, you are a 'schizophrenic'.
All diagnoses, in my opinion, are erroneous. It's so much better to look at things in a different way, to ask 'What happened to you?' instead of asking 'What's wrong with you?' and then deciding, 'It's this!'
There are no objective tests, after all, and how can the existence of one type of illness as opposed to another be decided on the basis of observation of behaviour? I remember years ago, when I was not much more than a child, nineteen years old, in hospital, ranting about 'sisters under the skin'. 'That's very profound,' commented a nurse.
'Someone else said that,' I told her. This probably went in my medical record as evidence that I was hearing voices - but I was merely quoting the lyrics of a song and didn't want to take the credit for them! (I'm not saying I wasn't very ill indeed - I really was - I did and said all sorts of ridiculous things, some of which I may have forgotten, which would probably be a mercy).
The 'Power Threat Meaning Framework' book sets out an alternative to diagnosis. In the meantime, as Lucy Johnstone said in her talk, those of us who have been struggling with them just have to think how silly they are, but perhaps play along if we need benefits or other help that is dependent on a particular label.
Personally, it's the sense of injustice that bothers me most. The idea that someone has labelled me unfairly and yet won't retract that label despite all the evidence against it... The idea that young lives are still being ruined by this issue, despite all the evidence...
Anyway, you may say, that's all old hat. We've heard it before. You said at the start of this blog post that you were upset today - well, why? What's all this about murderous nurses?
Well, in the news today is the case of a nurse who has been arrested for the third time for murdering babies - and this time she has been charged in court. Presumably there is sufficient evidence to convict her now - although of course we must remember that anybody who has not been proven guilty must in the meantime be assumed to be innocent.
But the case is shocking. The girl looks so sweet, so innocent - the epitome of a caring nurse. How can she have committed such heinous crimes. How could anybody?
I recently started a very part-time job, looking after an elderly chap. I’m devoted to him already – he’s so kind, so grateful, so clever and interesting. In fact, going to visit him doesn't really feel like going to work. I'm basically just going to visit a friend, making him breakfast and having a chat and then getting paid for it. Let's call my new friend M.
I didn't tell M about my diagnosis when I met him and accepted his job offer, because for one thing I wanted the work and for another, I didn't want to scare the poor man to death. However it was on my mind, as it usually is. I know I'm as safe as anybody else, safer perhaps. I have the correct insurance for the work, and I have an enhanced DBS form. But I'm aware M is vulnerable because he's elderly and needs personal care, and I'm glad his son and daughter live locally and can safeguard him. (I asked him for their phone numbers and called them both to introduce myself before I started work, because I don't want anyone to think I'm potentially taking advantage of anyone's kindness, never mind them thinking that I could be potentially dangerous... I always remember the father of one of my daughter's friends, whose wife is wheelchair bound, saying nobody would choose to be a carer if they weren't hoping to be left some money on their death. I think this is an appalling viewpoint - but I won't go into that here because I don't want to digress further).
Anyway, my employer's previous carer left due to mental health problems. When he told me about this he was not at all judgmental about her, and after he'd spoken about it on several occasions I felt that really I should tell him I’ve been there too (it took me a few weeks to tell him and I still didn’t divulge the whole story or the diagnosis, just said I'd been in hospital a long time ago due to a nervous breakdown).
We often discuss the news, and this morning he brought up the subject of the nurse who has allegedly killed eight babies and attempted to kill another ten. It started me off – he said she must have something wrong in her head, I said that of course she must, anybody must, if they are capable of harming another human being. But then, I said (I’d already been thinking about this because I read the article in The Times online this morning before work) I bet they’ll diagnose her with something. (My best guess is schizophrenia. And then all the other people with 'schizophrenia' (including, apparently, me) will feel even worse than usual… are we unstable too? Are we capable of murdering babies? Etc. And if we don't think it of ourselves, there are other people who will think it of us.)
I've said it before - it shouldn't need saying - being mentally ill does not mean you have a criminal propensity. It's a bit like drunks perhaps - some of them get violent under the influence, some get soppy, some of them just get extremely inebriated and wet the bed or whatever. Lose control of their bodily functions, I should say. But of course crimes committed under the influence of alcohol - and there are a lot of them - can be attributed to an external cause, whereas 'mental illness' is seen as inherent to the person.... Although it's my opinion that people who abuse alcohol are often self-medicating their emotional distress...
Anyway, I went on a bit and then M (my employer) said, ‘Do you think someone can do something without realising what they're doing?’ (because this is what the article in his paper had said happened in this case).
‘No’ I replied, 'Although the mental health people would probably say yes.' But then later (going around Aldi doing the shopping, somewhat distracted) I thought maybe you can do things without realising, if you’re very ill. I mean, as I have said, I did and thought some ridiculous things when I was mad (and I really was mad). Some of them might have been erased from my memory, as I have said. Others have certainly not been. But – and it’s a big but – I know I never would have hurt anyone. And anyone who does hurt anyone should not be treated differently on the grounds that they are 'mentally ill'.
I think there were turning points in my own illness and my treatment and diagnosis. I remember at the start of my first period of hospitalisation, when I was in an isolated room and visited at intervals by teams of nurses, mostly men, who would pin me down on the bed and inject me with drugs because I wouldn’t take them orally (this is really the most brutal of violence and I am sure if anybody had said ‘Take these tablets or you’ll get forcibly injected again’ I’d have done it, but the choice was never presented in that way) – I remember one day I threw a bowl of water at a nurse. Not the bowl, just the water, and it was only luke-warm (I checked first). I remember my thinking very clearly – this was all so bizarre, it must be a dream, I could check by throwing the water at the nurse, see if it was really wet, but of course I should check first in case it was real and the water was hot and might hurt the nurse…
That was the only ‘violent’ thing I ever did – but perhaps it was enough to earn me the diagnosis. And of course, there was the 'sisters under the skin' thing and probably other similar misinterpretations of my behaviour and/or speech. And then much later, after my second breakdown, when I in my mid-twenties, attending a day hospital, I was stupid enough to provoke a psychiatrist who was speaking to a colleague as I stood nearby. He was using medical language and I said something to the effect that he wasn't as clever as he thought, anybody could understand what he was saying... I could see the anger in his eyes and was quite pleased with myself for touching a nerve. Stupid of me, and a little unkind too.
The thing is, as I have already said the diagnosis discredits a person. There could be anything in my medical notes - it could say 'Louise did X, Y, Z and she has forgotten'. I would never even know what had been said about me (I did once ask to see my medical records and eventually got them, but some of the notes had been left out because of 'third party interests' or some such thing).
The mental health team recently refused to even meet me and talk about the diagnosis when the GP referred me at my request, earlier this year. I appealed to my MP, who promised to refer the matter to Matt Hancock - but then Covid-19 happened and for some reason the global pandemic appears to have taken precedence...
It’s not all about me. It really isn’t. You could say that things worked out for me – I have the life that suits me now. I have my four lovely children, my wonderful husband, our happy home. I’m still anxious at times, I might never have thrived in an office or another work environment.
But it all still matters, terribly. It’s about the young people who are still being labelled in this way – about their parents who are being led to believe that there is something seriously wrong with their kids, and that they should take anti-psychotic drugs for the rest of their lives (and let’s not forget these drugs have many severe side-effects and shorten lives by an average of twenty years). Under another, more equitable system, these people might recover and go on to flourish.
‘It’s not fair’ I said to M this morning, and then I shrugged and added, 'But life isn’t fair.' And things could always be worse. I can't bear to imagine how I would feel if it was one of my babies who died in intensive care... my eldest was premature and was in special care for a month after her birth. If anyone had harmed her while she was there, I don't think I could have coped. I think I'd have gone mad and I don't think I could ever have recovered my sanity, or gone on to have more children. I literally cannot conceive the degree of distress that parents must feel at the loss of their baby and my heart goes out to all the parents involved in this case.
And yet. I feel I need to keep on with my 'mission', if I can call it that. There's so much that needs fixing around the question of mental health diagnosis. As Lucy Johnstone said in her talk on Saturday, it's all about power. And she's right. It's about abuse of power and injustice and it needs to stop.
The problem, as I see it, is the way the criminal justice system has become enmeshed with the mental health system. The two things need to be separated once and for all. I've written about this before here... I won't go into it at length now. But I think it's crucial to the issue of injustice in the system and I think that a proper analysis and reform would go a long way to solving the various problems.
I'm not going to give up. I am ideally placed to do something about all this. I have nothing to lose. I am no longer young, I've long since given up any idea of a prestigious career…my husband and my kids love me, understand what I’ve been through and know the truth of who I am. The children are all old enough to appreciate the importance of the issues involved.
The only issue is that I still get upset about it all on occasion. As I said at the start of this blog post, I find it difficult sometimes to be calm and dispassionate on the subject of mental health/emotional distress. I can even be a little paranoid – I worry that people might think I am mad, or even worse, believe that I capable of evil, even though there is no reason why they should (apart from the silly diagnosis).
Well, so what if they do? Why should I care what people think?
I have a job to do. I need to shed light on an important subject, and I'm just going to get on with that, and do it to the best of my ability.
