Thursday, 18 October 2012

What's in a Name?

So, on Tuesday (it seems like longer ago) I attended a talk at Bournemouth University given by a nurse called Ciaran Newell, who specialises in treating eating disorders.  He spoke about labelling as it relates to stigma and discrimination, something he says he has personal experience of, being a) a male nurse, and b) Irish. 

He was an eloquent sort of chap (I suppose it would not be PC to speculate here on whether he has kissed the Blarney Stone.  I wish I could kiss the blarney stone, come to think of it...  I wonder where it actually is?  Does it exist, or is it just one of those expressions?  Anyway...)

The talk was interesting enough.  It marked the end of Mental Health Awareness Week at the University, which is a whole programme of events around World Mental Health Day, a commendable enterprise.  I attended a talk during the same programme last year - Minette Waters, the author, gave a talk relating to the charity work she does with the criminally insane (what an awful expression that is!  I don't think I have ever written it down before - can it really be the correct term for people who have committed a crime due to illness?)

So.  Ciaran talked a little about the offensive nature of labels, but then said that on the other hand, labelling helps treatment and understanding.  I hate it when mental health professionals say that!

Labelling does not help anything or anybody.  I can't be any clearer about this.  Let's take the label 'Schizophrenic'.  It does not make any difference to the treatment - because the same medications are used as in bi-polar, schizo-affective, and other disorders.  Basically, when a patient suffers psychosis a cocktail of drugs are tried in an attempt to remedy it, until something works.  Sometimes, if after several years a medication is changed and a patient responds well, the diagnosis is changed as a result.  Psychiatric treatment fundamentally operates by a process of guesswork. 

I am not making this stuff  up, although I would not blame anybody for thinking that I am.  There is a huge weight of literature on the subject of the complexity of mental health treatment - just take a look at the Mad in America website (link on the left hand side of this page) which will bust a few myths to say the least. 

(I am aware, by the way, that I may be preaching to the converted here, but I am hoping to have rustled up a few new readers recently and if there is anybody new here I want to point them in the right direction from the outset).

So that's treatment.  And as for understanding...  How can anybody possibly understand me better once they are told I am schizophrenic?  Surely it will just cause them to look at me in a different light, rather than accepting me as the human being they previously thought I was?  Not just me, obviously, but anyone.  There is no understanding of the condition, not even amoungst mental health professionals.  To them, I am schizophrenic.  Foolstop.  The fact that I have been on no medication for more than ten years and have no symptoms of mental illness, or any degeneration of the brain, counts for nothing - supposedly I am just waiting for the next breakdown.  And if it never comes?  That will prove nothing.  And if it does come?  Ah yes, then they were right.

I asked at the end  of the talk whether the speaker thought it would be beneficial to change the label of schizophrenia, and he replied that it certainly had helped to reduce stigma and discrimination by changing the name 'manic depression' to 'bi-polar disorder' but that 'Schizophrenia isn't quite there yet'.  I didn't quite understand what he was trying to say, but another member of the audience (who I have seen before, I think he is a member of the University staff) jumped in then and said that there is currently a move to change the diagnosis to 'thought disorder'. 

Now, how much good would that do?  How many people would feel that they have been given their lives back?  'You are not schizophrenic, you have a thought disorder'.  What a huge relief that would be.  Even for me, who maintains that I don't care what I am called, because the fact that I manage without medication and don't have any symptoms of mental illness is enough proof that I am not schizophrenic, even if the medics still insist that I am. 

Truth is - the label still hurts.  Nobody is that strong that calling them a lunatic, and saying they will always be one, wouldn't hurt. 

I don't want to diss Cieran - I was embarrassed after the talk because I had asked a lot of probing questions at the end.   I didn't want to show him up, but I just think this kind of stuff needs to be properly understood.  And what better opportunity could there be than during a talk about labelling?

Cieran demonstrated a high level of understanding - he spoke of how a label impacts on the identity of an individual, and can block self-realisation.  He spoke about how the individual with a label can adopt the characteristics linked with that condition.  That is exactly what happened to me during my day hospital days - I was taught what to expect from life as a 'schizophrenic' and I conformed, because by being compliant I was protected (I gained housing and state benefits, I had a place to go every day). 

Cieran spoke about how the labels can cause social exclusion because you feel unable to tell others about your condition, and then because you are forced to hide you always feel at risk of being found out.  Again, spot on.

But - he said then that this sense of shame and the resultant not-telling, was an 'adaptive response'.  He said that the fault in stigma lies with society, not with the individual.  What he failed to recognise - because he doesn't have the label 'schizophrenic' - is that not-telling is a necessary response to extreme labelling. 

Why should you tell the world that you are a 'schizophrenic'?  Because it makes things easier for others in the same position.  But in doing so you are making a personal sacrifice of yourself - of your own standing in society, perhaps compromising your family, perhaps as a result losing your hard-won peace of mind.

I do it, because I am lucky to be in a position of strength - on the days when it all gets too much I can hunker down with my family, who thank God don't see me as a 'Schizophrenic'.  Just take a few days to re-gather myself.  But I wouldn't recommend it to others.

Apart from anything else, when you stand up and say, 'I'm a Schizophrenic - but I'm better now' (knowing that this does sound mad, no matter how sane you try to look)  you are not holding out any real hope for other people.  The mental health professionals won't acknowledge that I am better - so why on earth, I wonder at times, did I ever expose myself in this way? 

I mentioned the anomoly to Cieran - that recovery from schizophrenia is supposed to be impossible without medication and yet I don't take meds and the professionals still won't accept that either I don't have the illness or that I am recovered. Another member of the University staff said that some professionals see schizophrenia as a relapse/remission syndrome - but that all of us are equally at risk of having a psychosis some time (and this was meant kindly - the implication was that therefore I should not take it personally). 

But there is a big difference between a general concept of being at risk (which would not impinge on most people's consciousness - we are all at risk of everything all the time, and we have to ignore that fact in order to function in our daily lives) and being told by professionals that you should never consider yourself mentally well because you have a brain disease that you will never recover from.  Psychologically, there is all the difference in the world.  It takes an effort some days to convince myself that I am sane - even though I am clearly not insane - because of the darned label and what they tell me I should expect from my life and from myself.  How can I expect other people to believe that I am normal under this sort of stigma? 

This is why when an enlightened mental health professional like Cieran stands up and makes enlightened statements like, 'Diagnosis can make what is transient, permanent' (a quote from Burke and Porter) or explains the faults in service provision, as he did, I can't be simply grateful, I have to keep pushing for further understanding, proper understanding. 

Yes, a diagnosis of schizophrenia can, as he points out, open the door to all sorts of services and provisions (even ensure that one is fed and housed, as I was).  But it sucks the soul out of an individual.  It makes them fear themselves.  It even makes them fear recovery (because if that happens, by some miracle, one will no longer be fed and housed, and then how will one survive in the world?)

How exactly is one suppose to survive as a schizophrenic in a world of human beings?  One is not allowed to recover - you are told that recovery is impossible, it is a lifelong condition, and you need to take medication for ever (regardless of the impact that medication has one your health).  Recovery, if it does occur, is not acknowledged - the label stands.  You must learn to live with that label - it is society's problem, not yours, apparently.

Would you employ a schizophrenic?  I don't know that I would...

Ciaran does have insight - he proposed solutions to the problem of labelling, which included re-education, use of the internet, of peer support and advocacy.  But that is just tinkering around the edges of the problem - the label itself needs addressing.  Nothing else could make as big a difference to the actual living of lives - nothing could be kinder - than simply to remove the stigma from our shoulders.  'You are not schizophrenic.  You have a thought disorder'. 

Job done.  Then people who have experienced the problems will feel more able to speak freely about the condition, the symptoms, the risk factors.  Then young people can be educated on how to be watchful for the signs, how to guard their mental health. 

I did not mean to heckle Cieran - on the other hand, I really wanted to educate those students.  (The room was packed by the way - perhaps a hundred people in the audience, in contrast to the event I attended last year, which had perhaps ten, and far more than the thirty or so I spoke to in Newcastle).  Of course, Cieran's field of expertise is eating disorders, not schizophrenia, and so I suppose I couldn't have hoped that he would understand the impact of the diagnosis that I have.  I should not have taken it personally perhaps - but throughout his talk he constantly referred to schizophrenia, and in the end I found that I could not stay quiet. 

I didn't know quite why I have felt so teary and vulnerable for the last couple of days, and why my self-esteem had suddenly plummeted.  Now, writing this, I am beginning to understand.  It has been an emotional time since Tuesday (it wasn't easy standing up and announcing that 'I have Schizophrenia' to a room full of people who were there to listen to somebody else) but I feel better already.

Writing helps, as I have been saying for a long time.  If you are new to this blog, and have suffered emotional distress or are still battling with it, try writing down how you feel about it all.  You don't have to show anybody what you have written, but just try it and see.  It helps.  The tears may come (tears of self-pity? of anger?) but afterwards you can re-read what you have written, and you can feel proud. 


  1. Well, if you no longer have symptoms and are able to get on with your life, how can you be "schizophrenic"? I would feel teary and vulnerable, too, in the face of someone who believes that once schizophrenic, always schizophrenic. That kind of non-thinking is simply daft! I think Cieran was speaking outside his field of expertise, and come to think of it, if he himself doesn't have an eating disorder, he's not an expert in that area, either, he's merely someone who has read the texts and worked in a clinical setting.

  2. Well, if you no longer have symptoms and are able to get on with your life, how can you be "schizophrenic"? I would feel teary and vulnerable, too, in the face of someone who believes that once schizophrenic, always schizophrenic. That kind of non-thinking is simply daft! I think Cieran was speaking outside his field of expertise, and come to think of it, if he himself doesn't have an eating disorder, he's not an expert in that area, either, he's merely someone who has read the texts and worked in a clinical setting.

  3. I am so glad you are speaking up and I admire you for it. Firstly doctors don't know themselves what they are speaking about when they label you. They never mention to you that psychosis can be just a passing problem brought about by all sort of things like delirium due to infection, the medications they ply you with or, in my personal experience, by severe sleep deprivation and stress (or distress). One of the problems is that psychiatrists have not the time to look into what brought on the psychosis; they look just at the symptoms and are pretty quick at labelling you and killing all hope by brainwashing you into believing that there is no hope.

  4. Hi, again, Louise,
    I've was tossing and turning in bed last night thinking about what you wrote.
    "I didn't know quite why I have felt so teary and vulnerable for the last couple of days, and why my self-esteem had suddenly plummeted."
    My assessment as to why your self-esteem plummeted is because you rubbed up against a medical professional. Early on I learned/read from ex-patients that they had to reject the medical model of the illness, and that meant ditching their psychiatrist or having anything to do with hospitals and uniforms. I still get a queasy feeling when I walk past the building where my son's day program was held. That feeling is passing with time, but for a while I hated being anywhere near that place. I have also heard complaints that lectures or programs about recovery should never be held in a hospital or near a hospital for the same reason. It evokes post-traumatic stress disorder!

  5. Hi Rossa

    I wrote you a long reply - too long to fit in this box, so I had to make it into a new post 'Community Celebration Event' which I have just published. Louise x

  6. Dear Louise,
    I found your blog a few days ago, and when I read this post - which I re-read just now - I was deeply moved. So much so, that I immediately bought the Kindle version of your book. I am now about half-way through your amazing book.

    You are so wonderful, insightful, and brave. And, such a talented writer!

    I am 59 years old, although I truly do not feel even half as old. I just looked at the date, wondering if I'm now closer to my 60th birthday than my 59th, and was surprised to realise that today I am precisely halfway between my 59th and 60th birthdays.

    You know how those numbers ending with a big round zero tend to make you uncomfortably aware of your life passing by? Thirty was very difficult for me, forty more so, fifty I thought I was going to die from the shock, but sixty? Oh my goodness! What makes this one especially poignant is that my first great-grandchild is on the way, he is due in February.

    Every season in life brings carries its own perspective and priorities. This season, in my case anyway, is about making sense of my life, before it's too late. I am searching for answers to the dysfuntion in my family that has been handed down through the generations like a curse, in hopes that I may pass on the solutions to my adult children and grandchildren.

    This is why I am now looking at something that I have tried not to look too closely at, for over 45 years. In 1967, when I was 14, I was diagnosed schizophrenic and committed to an insane asylum. I was there 2 years. I spent much of that time locked up on the maximum security ward for the "criminally insane," because I kept running away. I had never committed a crime beyond petty childhood shoplifting, for which I was never caught, by the way, nor had I ever tried or threatened to harm anyone, myself included. Yet there I was, a skinny, shy teenage girl, on lock-down with murderers. It was truly a nightmare.

    Many doctors have told me over the past 4 and a half decades that I must have been misdiagnosed as a teenager, because schizophrenics do not get well. I have wanted to believe them, because who wants to acknowledge that they were ever psychotic? But the truth is, now that I am voracioiusly researching and reading about schizophrenia, that yes, according to the prevailing definition of that label, I was schizophrenic for two of my teen years.

    I have recently started writing a book, primarily for the sake of my off-spring, and also to help me get a clearer picture of what happened to me so long ago. I wish I had the courage to use my real name on my book, but I do not, although my children and grandchildren will know, of course. But to go public as you have done frightens me. The wounds my ego has suffered for the past 4 and a half decades as a result of that stigmatizing schizophrenia label... it would take an entire book to explain it. I hope you never regret having let that cat out of the bag! Although, I do believe that's what it takes to begin turning the tide of society's attitude around.

    Thank you for your inspiring courage! Thank you for sharing your truth with those of us who have almost been destroyed by this truth!


  7. How lovely to hear from you, Rachel. What a sad story you have to tell - and yet such a happy one, because your whole life since has been testament to your strength in managing to recover. You were so young to be ill, and it was so unfair that you were treated so harshly.

    Of course you were psychotic - no shame there, the term only means a serious thought disturbance (I looked it up in the dictionary many years ago). But schizophrenic - no. As those doctors have tried to reasssure you, you do not have a lifelong condition - you were ill, and you got better. All the credit to you!

    The mind can and does heal, as you and I and countless others have found. Have you seen the 'Beyond Meds' site? It is a great resource - as is 'Discover and Recover' and 'Mad in America'.

    I do sometimes regret letting the 'cat out of the bag' - but I am not sure that it was ever properly in. It is better to know that one is the subject of gossip than to fear it - or so I have found. And was it Oscar Wilde who said that the one thing worse than being talked about is not being talked about?!

    My biggest worry is the same as yours - that the next generation will be affected in some way. But at least, if they are, I will be able to reassure them that they have nothing to be ashamed of - and shame is the worst legacy of mental illness. Without it, there would be a lot less harm done, and recovery would be a lot easier and quicker.

    Your comment reads beautifully, I am sure your book will be fascinating, so please let me know when it is published, so that I can buy a copy.

    And age is, of course, just a number - as long as you are healthy and happy, so keep concentrating on those things. I am impressed - your first great-grandchild due. You are a matriarch!

    Thank you again for getting in touch. I will cherish your message.

    All the best, Louise

  8. Your reply has brought happy tears to my eyes. And goose bumps, as well!

    My life since the insane asylum has been anything but smooth sailing. Yet, I have survived, and that is truly a testament to the resilience of the brain and the human spirit.

    I am finding many similarities in your story, to the things I have experienced. For one thing, I was very shy as a child, people called me "bashful," and often asked me if the cat had got my tongue, because I had such a hard time speaking my thoughts aloud. Except when I was around other children, that is, then I talked a blue streak, until the school teachers put a stop to that! Like you, I also blush very easily... I feel like I am blushing now, in fact, just from thinking about it! However, in my case, I have never minded blushing so much. I am very glad I never thought of being too unhappy about my blushing, I would surely have driven myself crazy from that alone. Also like you, it takes very little alcohol to get me drunk, and the 2 times I smoked marijuana, I panicked horribly, and became very paranoid. The second time, my paranoia lasted for 2 or 3 days.

    Another big similarity is that, like you, books have been my joy, my favorite past time, and my great escape, for most of my life. I wanted to be a writer from the time I was 8 years old, but my mother ridiculed me for that ambition. Still, I did manage to publish a novel about 12 years ago. It did not sell very much, and the publisher has the most ridiculously high price on it. But it was a great feeling of pride for me to realize my life-long dream of seeing my book in print. Now that e-books are becoming so popular, I intend to do a brief rewrite of my novel to bring it up to date, and then republish it at a much more reasonable price. My novel has nothing to do with my mental illness history, by the way, it is strictly fiction.

    Although I am not schizophrenic, nor have I been psychotic since the age of 16, I have not been perfectly mentally healthy throughout most of my life, either. I struggle with periodic deep depressions and anxiety, and about 10 years ago I was diagnosed with Post Traumatic Stress Disorder. I do have all the symptoms of PTSD, as does my husband of 8 years, he is a combat veteran from the Vietnam war. We understand each other's "crazies," and that is a big help to our relationship.

    In my childhood home there was a lot of insanity, chaos, and trauma. My father was a minister of a small church, a very pious man, a faithful husband, and a loving father. But periodically he would behave like a total stranger, a terrifying stranger. The worst happened when I was 12 and my dad came so close to killing my mother that I had thought she was dead. I was so traumatized that I instantly went deaf! It was only when I saw that my mother was still alive, that my hearing came back, like someone had flipped a switch in my brain! (continued on next comment)

  9. (continued from previous comment)
    My dad was arrested that night, then taken to a hospital. There he was diagnosed with Multiple Personality Disorder, which today is known as Dissociative Identity Disorder. My father was never again the same, it was as though the loving, pious, protective part of his personality died the night he nearly murdered my mother. My parents divorced, and they each remarried someone else.

    Dad was bad enough, bu my mother's abuses were more actually far more damaging to us children than our father's ever was. One of the worst things that my mother did was try to gas us all to death, several weeks after the night my dad nearly killed her. She also did many other insanely abusive things, besides that.

    By the time I came out of the mental hospital - it was a huge building, the largest in the state of Missouri at the time it was built, yet it was closed in 1991 and torn down in 1999 - I had absolutely NO self-esteem. Like you, I have always had a very deep need to be completely honest, so right away I would tell potential boyfriends about having been labeled schizophrenic and placed in the most notorious institution in the state. As a result of my honesty, coupled with my utter lack of self-esteem, and my obvious deep-seated "neediness," most healthy men wanted nothing to do with me.... but users and abusers sought me out like prey. As a result, I have been through a series of abusive adult relationships and marriages, which not only was further damaging to me, it has also been very damaging to my three adult children, for having to grow up in such chaos. My children have suffered psychologically as a result, and they in turn have passed on their problems to my grandchildren... it's a horrible, ongoing cycle.

    Several weeks ago I found out that my pregnant granddaughter was afraid to tell her father, my 41-year-old son, about her pregnancy, because he has been so out-of-control with his anger in the past that he has twice put his hands around her throat in a fit of rage, over some small infraction! When I learned that, I was devastated. My son! My granddaughter! And now, her unborn child!

    This is why I feel so strongly compelled to take a very close, unflinching look at the history of trauma and various mental illnesses that can be found all over my family tree, and see if I can make some sense of it all. Most of all, I hope to find some resolution that has so far eluded me, that I can write down and publish as a book for the sake of my children's children's children.

    It's scary to do this! Although I have, as I said, always been honest and forthright with potential suitors about my past, I have tried to keep it from the public at large, and also I have gone to great lengths to NOT think about any of it in too much detail. But now I am digging up all of that old ugly rottenness, and taking it out into the light of day - OH! Scary! Painful!

    It helps me so much, though, knowing that YOU have done it, and having your book to read and refer to as a testament that YES, if Louise could do this thing, surely I can, too.

    Sorry this is so long! It's just such an amazing thing to me to find you, someone who has been through a similar horror, and has also come out of it. Thank you for the suggestions of the other websites, I did recently find a couple of them, and will check out the others, as well.

    I lived in England in 1976-77, by the way, and loved it. My husband of the year was working on an oil rig in the North Sea. We lived in Mundesley. I imagine it's changed some since then. That particular husband, my daughter's father, still lives in England, now with his second British wife.


  10. Hi again

    I think this is the greatest gift of the Internet - its potential to bring together marginalised people, and to enable them to give one another strength. I believe recovery from mental illness will be a lot easier now that we have this amazing resource. Another site I often direct people to is Glasgow Steps - '' - I have found it really helpful.

    It must be hard for you, having lived through chaos, to see the damage replicating itself in future generations. But remember, it is not your fault. The fact that you are doing your best to 'make sense of it all' is wonderful - you have the power to change and improve things for an awful lot of people, in your immediate family and far beyond.

    Good Luck!

    Louise x

  11. Rachel, I just started worrying in case my reply was too short! I am very interested in your story, and enjoyed reading your comments. I hope you will find writing the book a cathartic process. I would advise you not to push yourself too hard and get some counselling if you can to support you through it. I expect you will find it hard to work your way through all those traumatic memories - but hopefully you will feel a lot better afterwards, and can then 'close the book' and put the bad times properly behind you. Facing my demons certainly helped me - and to hear that my book has helped others (like yourself)is the greatest reward I could have wished for.

  12. Louise, I just finished reading your wonderful book a few moments ago. I cannot find words adequate to express what I am feeling. Your candor, and your beautiful, resilient spirit, has resonated with the deepest part of my soul. When I feel that I have calmed down enough to do it justice, I will leave a 5-star review for your book on Amazon. Let me know if there is any other site you wish to have me leave a review on, and I will gladly do so.

    To give you some idea of how profoundly your book has moved me, I have left it on my Kindle, and have placed it in a file that I've labeled "Favorites." I am a voracious reader, and I just totaled it up: I have over 300 books of various types on my Kindle at the moment, plus there are a number of books that I've relegated to archives, and several books that were so awful I have deleted them all together. Of all these books that I've had on my Kindle, yours is only the 12th one to be filed in my Favorites!

    I am doubly inspired now to continue writing my own book. Oh, and yes, as you rightly suggested, I am seeing a therapist regularly and discussing all these things with him. I agree that having the support of a good therapist is particularly important for me now, as I'm writing my story and digging up all the painful past. I have been sending him the chapters of my book, via email, as each one is completed. When too much time goes between chapter submissions, he lets me know!

    Thank you so much for your very sweet and thoughtful replies. No, you weren't too brief at all. I dumped so much out all at once in my last run-on comment(s), there is no way that anyone could reply to all of that. My fault, I'm truly very sorry, I just got so excited! You have more than enough on your plate, with four young children, I do not want my comments to be a burden to you.

    Yes, as you say, it is wonderful that those of us who have been so terribly alone with our peculiar kind of pain can now find like-minded souls via the internet. My husband has a support group he attends most weeks, with other combat veterans who have also been diagnosed with PTSD. He is much better for having this group of like-minded souls, and his best and closest friends are all part of that group. I have long wished for a "group" of my own, but, like you, finding other recovered persons with the label of "schizophrenia" is almost impossible... not, I'm finding out, because there aren't any, but because most of us do not go around broadcasting our “crazy labels.”

    It was amazing to me to discover, as I read further in your book, that you also had an episode of going deaf during extreme duress. I wonder if you will ever recall the precise word or phrase that caused your hearing to shut down. In my case I had no clue, for over 46 years, as to what exactly I heard, that caused my brain to stop hearing. I only knew that I had heard something horrible, that told me my father had just killed my mother.... which turned out to be incorrect, although he had very nearly killed her, she did survive. It wasn't until August of last year that a therapist helped me remember, by a logical thought process, the exact thing that I must have heard that gave me the false belief that I had just heard my mother being murdered... I will tell about it in my book, it's too long to go into here.

    Speaking of which, I am now going to leave you in peace and go write on my book. Please do not feel that you need to reply more than a sentence or two at most, OK? I'm sending you a big grateful hug, all the way from New Mexico.


    PS: Just as I was about to press the publish button on my comment, our dog had a nightmare and I rushed to comfort her. She is a rescue dog, she had been abused and abandoned as a puppy, found starving and injured, and now, more than 5 years after we adopted her, she still has all the symptoms of PTSD from her early traumas. My husband and our sweet fur-baby and I are truly made for each other. We put the FUN in dysFUNctional. ;)

  13. Hi Rachel

    Your lovely comment made me blush slightly! (I don't mind blushing these days, I see it as a sign that I am still alive...) I am so glad you liked the book so much, and a review is always welcome; I would really appreciate that. I don't know about posting reviews on other sites - but anywhere you think of would be good, if and when you have the time. In fact, my husband has just told me that if you click the link at the top of this blog and see all the places the book is available (Barnes and Noble, etc) they all take reviews. But please don't spend too long on this - Amazon will do just fine!

    Please let me know when your book is out, I will read and review it in turn.

    I am glad things are going well for you.

    All the best, Louise.