Wednesday, April 26, 2017

Comments by Louise Gillett

Showing 16 of 16 comments.

  • I read this with interest. I strongly agree that a name change would be beneficial. However, I notice that the suggested new label of PSS makes no mention of the potential for recovery. I know that I am not the only person labelled with schizophrenia to have made a full recovery – most of the others, very sensibly, stay quiet about the fact that they were ever diagnosed. I think it would really help people suffering from mental health problems to know that, whatever label they are given, there is always the potential for a full recovery. Until this fact is acknowledged, these diagnoses will always be damaging to the individual and medications will continue to be overused. I understand that they may be useful for some, in the short term, if they are not forcibly administered, but I think far too many people are left languishing on anti-psychotic medication for life – life that is often severely curtailed as a result of these drugs.

  • It’s free to download from Amazon Kindle today and tomorrow. Help yourself – and pass the word!

    I am a member of Rethink – and I actually run a weekly writing group for them (unpaid). I am frustrated by some things about the organistion – most specifically the fact that they are partly funded by drug company money. And as you say, they tend to represent carers more than sufferers.

    However, the people who I have met who work for them are kind and they do listen… I have hopes that over time attitudes will change, and I hope that by joining forces with Rethink I can hope to effect change from the inside.

    I would not encourage anybody with ‘the’ diagnosis to stick their necks out and own up to it – it took me twenty years to muster the courage to do so! One needs to be ready. But I have greatly benefited by ‘admitting’ to being a ‘schizophrenic’ – I am now free of the shame I once felt from being assigned such a label – I see it for the farce it is.

    I know there are thousands of others like me out there who have known how it feels to be completley ‘mad’ and who have subsequently recovered full health.

    As more people stand up to be counted, attitudes will surely change.

  • I met Robin Murray in London at an event held by the Schizophrenia Commission – they were consulting people with a diagnosis of schizophrenia, to find out our opinions. I too had high hopes for the man, and for the event. It was clear from the testimony of all those present that day that the label of schizophrenia was damaging, and posed a barrier to recovery. The summing up by Clare Gerada at the end of the day made that clear. I was devastated, therefore, when the Commission, chaired by Murray, failed to recommend a change of name for the condition.

    I heard Robin Murray speak at the Rethink Members Day event in Nottingham last November. He did criticise the system, although never his own part in it. He said a name change for the condition was perhaps on the cards, but ‘we are not ready yet’. It goes on. I don’t want to be unpleasant, but from what I heard that day, I really have no regard whatsover for him, or his opinions, any longer. I just watched the above video, and I honestly feel that, even though it was on my favourite subject – ‘schizophrenia’ – it was half an hour wasted.

    Fuller Torrey is obviously a menace – I called my memoir ‘Surviving Schizophrenia’ in the hope that people seaching the net for his work might find my book instead or as well as!

    I am reading Agnes’s Jacket by Gail Hornstein – now, there is a text worth its weight in gold. In just the first few pages I realised that this book was just wonderful. Hornstein writes of Frieda Fromm-Reichmann, who ‘…insisted that schizophrenia was a condition of abject loneliness caused by early experiences of trauma that could, even in its most severe forms, be healed through relationship’. What more do we need to know?!

  • The Schizophrenia Commission report used my case study. However, they asked for permission to ‘tweak’ it, on the grounds that my views re. the diagnosis (I am very anti) did not reflect the views of some of the Commissioners. When I said ‘No’ – that they did not have to use the study, but if they did then it must remain intact – the person who had contacted me said she thought I was right to stand by my principles, but that she had been asked not to include the line (about the diagnosis). She then asked for another opinion, and included the case study verbatim.

    Sometimes I feel despondent about all this, and wonder whether I can be bothered to keep fighting it. But I know what damage the word ‘Schizophrenic’ does to a person – even though I now recognise that I am not a ‘schizophrenic’ the label still hurts – and therefore I know that I must keep trying to make others understand the harm that is being done by the use of this word.

  • And – ‘mjk’ – you still are a mother. One day, when they are old enough, your kids will come back to you of their own accord. Write down what you have written here somewhere safe and permanent, so they can read it and understand why you did what you did. I believe that in time they will be glad that you preserved yourself as a person for their sakes.

    And also – you write well. I would suggest that you try to write down more about what has happened in your life, and what it all means to you. It will help, and you will continue to get stronger. I’m sure of it! (But do try and get some support while you are writing, in case it becomes traumatic to remember and record it at times)

    Sorry for the unsolicited advice!

  • Thank you for your article, Alice. Your patients and ex-patients are very lucky people.

    Sometimes when I think back over my experiences (I wrote a book called ‘Surviving Schizophrenia: A Memoir’ which sums them up) I used to wish I’d had more trust in mental health professionals. I think maybe I wouldn’t have had such a bad time in hospital if I’d trusted more (eg. willingly swallowed the pills instead of having to be forcibly medicated).

    Now, however, I see that I am lucky not to have trusted psychiatry, and to have found a way through my problems without it.

    I have found a safe and nurturing environment with my husband and children, and for the last twelves years I have not taken medication and don’t have any symptoms of mental ill health. A psychiatrist recently confirmed though, that in his view I still have ‘schizophrenia’. I don’t see how that can be right in the circumstances…

    But at least my children have not been taken away from me (and won’t be – they are very well looked after and growing into wonderful people). That must be truly awful, and I do sympathise with the lady who commented above. I think things are slightly different in England, certainly the health care system is more equitable. If I was offered a choice between losing my kids and taking pills though, I would take the pills every time (I am not saying this to criticize, although I know it must sound like that – it’s just the only choice I could make. I admire the lady for being strong enough to stand by her principles and I recognise that I am really lucky never to have been put in the position of having to choose).

    Anyway, I have gone off at a tangent. What I originally wanted to say is that I wish all psychiatrists thought the same way as you about diagnosis – and that there was much less reliance on medication, especially long-term use of it.

    Let’s keep on working with ‘Mad in America’ everybody, to change the way the world thinks!

  • I have read that book, and met Henry and Patrick and had dinner with them (through my recent author talk at Newcastle University, associated with the ‘Reassembling the Self’ exhibition). See my blog ‘Schizophrenia at the Schoolgate’ for further info.

    Henry and Patrick also spoke about their book, and when I asked Henry afterwards whether he thought he would have fared better with a diagnosis of bi-polar disorder (in light of his creative talents) he told me he was ‘Proud to be a Schizophrenic’. This, I found sad – anyone who identifies themself as schizophrenic and agrees with the diagnosis has no chance of recovery, because one is told that one has a degenerative ‘brain disease’ that is a lifetime condition.

    To get better, you have to move outside the psychiatric system and reject their view of you as diseased. I don’t mean that people should unilaterally stop their medication and cut off from all medical support (I only ever stopped my medication under the auspices of medical professionals; I was lucky they allowed me to try). Just that you have to take a different view of yourself – as a human who has the potential to be whatever he or she wishes. Then you can work towards recovery – and you might be amazed at what you can achieve.

    ‘Henry’s Demons’ is certainly worth a read though. My favourite quotes are Patrick’s, but Henry’s parts are also very well-written. Patrick points out that mental health treatment in this country is a hundred years behind the treatment of physical health, and he also says of schizophrenia that, ‘Violence is not a symptom’. Simple but profound statements.

    I would love to read a sequel one day which shows that Henry has regained full health – but first he will need to give up his (in my opinion) misplaced pride in his label.

    Louise

  • Hi Chris

    So sorry it has taken me so long to reply – I have not been on this site since I commented on this article. I was not even sure when I commented if I properly understood what David Healy was saying – I will have to look at his own blog too.

    I am so glad to have heard your story, because it has so many lessons for me (and I’m sure universally). For a start, although I think I have fully recovered my mental health, I am aware I should not be complacent – I will now be especially guarded around the time of the menopause.

    I am sad to hear that your children have also suffered mental ill health. I hope that I can somehow protect my own from this – by being watchful and by loving them and protecting them as much as possible – but I am aware that I have no power over their futures.

    I still do not believe that mental illness is hereditary (probably because I don’t want to believe it). But the important thing is that your children have fully recovered, and I am sure you have been instrumental in that, because of your experience and knowledge of the subject. So I can learn from that too (although I hope I never need to put that lesson into practice).

    I am so pleased to hear you are off medication. Sometimes I feel like the only person in the world who has come off it – although of course I know otherwise through the internet. I have been posting on the Rethink Talk forum recently, and a chap wrote in response to one of my posts that he felt personally insulted when people ‘claim to have recovered from schizophrenia’ – this really hurt. I know medication works for some people, despite the side effects, but I feel that more people could manage without it, especially if they were helped to do so by the mental health professionals.

    And yes, activism and campaigning is really important – hard at times, because these labels hurt even though we know they have no place in our current existence. But keep up the good work Chris -and I will keep learning from you!

  • Hi. I have a friend who was mentally ill for the first time in her life after childbirth. There was also a recent episode of Newsnight on the BBC, detailing post-pueral psychosis (the subject matter of the programme was also covered on Radio 4) and one woman of the three interviewed had suffered psychosis for the first time, after the birth of her second child. So surely the condition has not entirely disappeared?

    (I also had post-pueral psychosis, after the birth of my first child, but I had a previous diagnosis of schizophrenia, which was taken as the explanation. I have been well ever since. That is beside the point, but I mention it to explain my interest in this subject).

    So, have you really not heard of any episodes of psychosis following childbirth, in people who have not been previously mentally ill? I have at least two other friends who suffered psychotic symptoms, although not the full-blown illness – in my opinion sleep-deprivation and hormonal factors triggered these experiences.

    All the best
    Louise Gillett (author of Surviving Schizophrenia: A Memoir).

  • My experiences (three episodes of psychosis and a diagnosis of schizophrenia) exactly tally with your theories. I did undergo childhood trauma – and I smoked dope – I found myself in an impossible sitation socially, financially and emotionally as a young person, and consquently I broke down.

    I recently learned that anxiety is often at the root of psychosis – I wish I had known this when I was younger, because I had no idea that the high state of anxiety I lived in, and the panic attacks which often engulfed me, were what made me susceptible to further breakdowns.

    I have been relatively well for a long time now – I have taken no medication for about eleven years and I have a husband, young children and a wide circle of friends – but the final step in my healing came recently after a course of cognitive behavioural therapy which helped to lay my anxiety to rest.

    The other thing that helps me nowadays is to believe that there is a higher purpose to this life. I baulk at formal religion – one set of tenets seems as good as another to me as long as they are based on kindness, compassion and so on – but it helps me to believe that there is a God of some kind, a reason why we are here, a plan. None of us knows what will happen when we die, but it seems to me that there must be some further element to such a rich and varied world, and it gives comfort to hold this thought. It seems harmless, and it helps!

    All the best
    Louise

  • I found this a very interesting and useful article. I have recently started working as a Peer Specialist and am hopeful that I will be able to help others, as you suggest, to regain their sense of self and of reality.

    Prior to each of my psychotic breakdowns, I was extremely sleep deprived, and I find now that a good sleep pattern is a cornerstone of staying mentally well.

    In fact, routine of all sorts helps – regular meals, exercise, the rigours of work, and so on.

    And, as you say, growing older helps – we become calmer, more self-aware, more secure in ourselves. All these things should prove reassuring to those who suffer psychotic breakdown – and especially the knowledge that recovery is a reality.

    Thank you Daniel, for being such a shining example to us all. One day I would like to follow in your footsteps and gain some medical qualifications; meanwhile I will continue to watch and learn.

    All the best
    Louise

  • Thanks for that, read what I could and left my reply – yes of course we should have a choice what medication we take, yes, of course we can recover without medication (given luck, someone who loves us, someone who listens to us, someone who cares…more luck, some financial security, some therapy…anything except clumsy attempts to chemically change our brains which cannot and do not help to mend our fragile and frightened minds).

  • Hi sarascot

    I am so sorry for the late reply – I have been on holiday for a couple of weeks and am only just getting back into the swing of things since I returned.

    I would really like to help you – obviously I am only an expert in my own particualar case, but I do feel that there are lessons to be learned for others and that I should be able to help reduce the effects of mental upset, having experienced the extremes of mental illness and now recovered myself.

    I see ‘Schizophrenia’ as a manifestation of extreme emotional distress; I am sure that there must be trauma of some kind to result in breakdown. This need not be trauma inflicted by any particular person of course; life brings its own difficulties. Most people I saw in mental hospital were extremely poor, for example – it seemed obvious to me that the stress of wondering how they would survive physically must have contributed to their emotional breakdown.

    Usually a ‘perfect’ childhood immunises a person against emotional upset, but obviously this is not always the case. Anyway, no matter what the cause of breakdown, it is irrelevant to the important thing – how to heal.

    I found cognitive behavioural therapy really valuable; I realised during therapy that I had fallen into negative thinking patterns (understandably given my background) and I learned how to counter these. Now I am much less anxious – and anxiety lies at the root of psychosis.

    Another thing I realised was that I needed to lead a ‘clean’ life – for me that means no drugs, no cigarettes, and I hardly ever drink alcohol. I also eat well, exercise, and make sure to get plenty of sleep – in other words, I use self-disciplne as a tool to help me stay well.

    If the sufferer you refer to hears voices (often the cause of a schizophrenia diagnosis) it is worth telling him/her that the voices are just a muddled manifestation of their own thought processes, and do not have to be obeyed.

    Do everything you can to convince the sufferer that they are a normal human being – do away with the ‘schizophrenic’ terminology if possible as it is dehumanizing. Try to foster a feeling of security. Encourage the sufferer to write/paint etc as a creative outlet. Research recovery stories to reassure him/her that recovery is a reality for many. Look at the ‘Beyond Meds’ blog by Gianna Kali and Ron Unger’s blog, ‘Recovery from ‘Schizophrenia’ and other psychotic disorders’.

    It may be a long long road, but the sufferer from emotional distress can and will reach a place of happiness and peace. Just remember that it is an individual journey, and the person will know for themselves when they are ready to experience reality and will find the capacity to work to get there.

    Another handy hint – a life partner helps. Friendships are always good. Anything that reminds the sufferer that he is normal will ultimately be the best way to integrate that person back into society – so always behave and speak to him/her in a natural and normal manner. Even when he/she seems not to respond, they will be listening and taking in more than you realise.

    I would love to know how things turn out, no matter how far down the line, so please stay in touch, here or on my blog. Thanks for your comment.

    All the best
    Louise

  • I came across Rossa’s blog several years ago now and have always found it a fascinating and elucidating source of information. It is always beautifully written, like the above piece.

    Rossa has, and is, undertaking valuable work for all those with a diagnosis of serious mental illness – she has left no stone unturned in her unstinting examination of all possible avenues to healing.

    As somebody who was once diagnosed schizophrenic, I have personally taken much courage and inspiration from Rossa’s search for alternative ways of healing her son – alternative, that is, to the misleading and damaging pathway of medication. If the drugs healed the emotional distress that they are aimed at, their side effects would perhaps be bearable -but in fact they fall so far wide of the mark that it sometimes seems almost immoral to aim them at it in the first place.

    This is something that Rossa discovered herself through her honest examination of the problems that her son faced, both within and without the family. I am sure that her blog, and the book that will soon follow, will prove an immensely valuable resource for anybody and everybody – because mental health is something that affects the whole world, and anything that leads to greater understanding of it is to be lauded.

    Rossa has found a graceful way to acknowledge that problems may begin in the family, but that this is no reason to assign blame to any person within it. Life takes us all in different directions and we all cope with our problems in whatever way we can – the important thing is that love, and human ingenuity, can find ways to overcome difficulties and that we learn and grow as a result – which may perhaps be why we are put on this earth in the first place.

    Thank you, Rossa, for this article and for all you have done.

    Louise x