Wednesday, 27 August 2014

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'.


  1. I understand what you're saying and as much as I hate the diagnosis myself, I know that there is a need for there to be some sort of label. So many people find relief in being given a diagnosis, but I agree with you that it should no longer be 'schizophrenia'. I've read a few websites about schizophrenia and I think most of them say that people are drifting away from the diagnosis. On Wikipedia, the Simple English language article for schizophrenia says: "Some scientists think that schizophrenia is several separate diseases that have some of the same symptoms." I think it shows that there might be a name change on the horizon!

    However, you and I have both been given the label of schizophrenia and unfortunately we cannot hide it from everyone. The DVLA for one. I had to declare schizophrenia to the DVLA and now I have a medical driving licence which is restricted to three years. I'm not sure if you drive or not but if you do and haven't already declared it, you should probably speak to your GP and see if s/he thinks you should declare it. And in some employment, employers sometimes require medical forms to be filled out before employment can start. It's a tricky one, because declaring schizophrenia can result in stigma but not declaring it can result in dismissal. So as much as you and I both want to walk away from the diagnosis, there's some places it cannot be hidden.

    But the important thing is that you're well. Schizophrenia or no schizophrenia, you're no longer suffering with your mental health. And that's the thing that matters!

  2. Hi Katy

    Good to hear from you as usual. Sorry to come across as all sorry for myself - you may well be right about a name change being on the cards. I hope so.

    Re employment - personally I would not mention schizophrenia to an employer. But I suppose it depends on the circumstances, and the employer. And I don't think I have schizophrenia, so it wouldn't be necessary! In your case, having met you, I don't think such a revelation would put anybody off you. But stigma is there, and it is a strange, unpredictable phenomenon.

    Re the DVLA - I used to have to reapply for my licence every three years too, because I told them about the condition in the days when I believed that I had it. I have held a driving licence since I was eighteen (almost thirty years!) I passed my test first time, and I have never had any points on my licence, or any convictions or other blemishes... So one day I thought to myself - I've had enough of this three year thing. I wrote to the DVLA and told them I am not mentally ill any more, that I don't have symptoms and don't take medication, and that even when I have been ill I have been sensible enough to recognise that I am not in my right mind and to stop driving (which is true). They gave me my licence back without any restrictions! (I am a firm believer in the goodness of civil servants).

    Thanks again for your support.
    Louise x

  3. Yes, I was asked at my son's well visit (he's 15 now) if there is mental illness in any of his relatives. I "lied." I used to say, "my mom." She had a psychiatric stay, so many years ago. She has, I realize now, undiagnosed BPD. But I don't even want to label her with that, though it helped me figure out strategies for coping. Borderline personality disorder is a problem with attachment. Why would I want to stigmatize her? If my son's pediatrician "needs to know" there is mental illness, I will share with him privately, not on a piece of paper. Oh, but since I entered perimenopause (unwittingly) some decades ago now, I came to find out I too have a "mental illness." I don't call it that, I call it a vulnerability. Even my best friends, who know me as strong and capable, will see me with a different eye when I say I have experienced psychosis. So I am very very careful who I tell. And I am realizing I do not want it on any pieces of paper that are outside of my control, for I do not want someone to judge me before they know me.

  4. PS: In the states, there are no restrictions for drivers, who have mental illness, that I am aware of. And I don't think we have to identify that we have a mental illness to our employers. I never have disclosed. I would only disclose if it helped me to obtain a job. Peer counselors have to have "experience" with so-called mental illness in order to be effective at their work.

  5. I experienced psychosis at the age of eighteen. I was at the time under extreme stress and very sleep deprived. I heard two critical voices in my head, constantly commenting on what I was doing and putting me down. I didn't tell anyone about my experience and put it down to just that : a strange and interesting experience. Eventually when things settled down in my family, the voices stopped and I have never experienced anything like it since. I am 70 now. I never considered myself mentally ill then or now but I realised that the trick was stopping myself getting stressed and leading a healthy life. Today I consider that experience as special which allows me to understand better people going through a crisis. A person who hasn't been there probably doesn't understand what it is all about and that's why the experts go diagnosing people so light-heartedly which, I agree, is totally unhelpful. Instead of labelling, people who have had a breakdown, should be helped to rebuild their confidence, taught how to handle stress and to understand what brought them to their knees in the first place.

  6. Hi. Sorry for the delay in publishing your comment and replying to it - I have had technical issues. It's really good to hear from you - how encouraging to know that you coped so well with your 'strange and interesting' experience and that it has not affected your quality of life. I am currently working on a book about recovery from mental health issues - would you mind if I refer to your story (obviously anonymously)? All the best, Louise

  7. Hi there, I was looking for "surviving schizophrenia" and I found your blog. If you don't mind, I would like to know several things that might help me to get close with my boyfriend's sister who's also diagnosed with schizophrenia. It's not easy for me to reach her. Not because I don't want to, but it seems like her parent feared that she might get annoyed being around other people. I don't have any idea of how she thinks, what kind of problems she had. I don't know how to start conversation with her because I'm afraid that there might be some topics which shouldn't be talk with her. She is completely fine when she is not having the episodes, she also writes like you and she is very talented in drawing. Earlier this year she is good enough to continue her study in theology after almost two years she left the university (she was studying multimedia design when she was diagnosed). But in the middle of this year the school called her parents and informed that she was disappeared from the dormitory. She was finally found by the local people and returned safely to the school. Her parents finally bring her back to home and now she has nothing to do again. So, in her daily life she interacts only with their mother because my boyfriend and their father are working in the office, usually until night. I'm wondering is it better for her to just stay at home or is it better to go out and interacts with more people in society?

  8. Well, I guess it depends on what she wants to do - she is a person, just like anyone else. I would advise you to ignore the diagnosis and just treat her like you would anyone else. If she is anything like I was she probably feels a lot of shame about the symptoms of her illness and the diagnosis she has been given. She needs help to realise that she is just a human being who has been ill and who can and will get better. If you can be friends with her and get her to go out and do things that would be wonderful - I am guessing that she may find it difficult at first due to nerves and/or medication. But be led by what she wants - recovery can take a long time.
    I remember the friends who stuck by me when I was ill - especially the ones who treated me as if I was no different from before (when I felt so completely different it gave me immense comfort that they behaved as though I was normal). Even if your boyfriend's sister doesn't respond when you are talking to her, she will be listening and understanding what you are saying. It is quite common for people diagnosed with this condition to shrink back inside themselves - this is sometimes called catatonia, and seen as negative symptoms of the mental illness, but is just fear (and shame, as I mentioned) in its aftermath. You would be surprised at what is going on beneath the surface even when people don't outwardly respond in these sort of circumstances.
    I hope that helps, Winny. I am sorry I didn't reply earlier - I haven't logged in here for a few days and I have never had email notification of comments on here, so I often get behind. I hope you see this, and I hope it helps.
    It might also help her if you refer her to this blog, and many others like it online (the Mad in America site is a great resource). I think it's really helpful for people who have had breakdowns to realise that it is a widespread occurrence, and that many people recover completely. It is really nothing to be ashamed of, but it may take a while for her to get over the shock of it all.
    Do let me know, if you can, how she gets on (and how your efforts to help pan out).
    All the best, Louise