Blissful Ignorance

The recent words of the new RCP president telling us that psychiatric diagnoses are scientific and necessary reminds me of the old childhood saying ‘Pull the other leg, it’s got bells on’. If he was only saying that some people believe it is helpful to understand their problems in terms of a diagnosis, I wouldn’t refute that. We each have to decide what’s right for ourselves.

But scientific? Necessary? People who challenge such views often get accused of presenting unbalanced arguments, which seems ironic to me given the often ‘unbalanced’ views of the professionals supporting the validity of psychiatric diagnosis.

Many years ago, in my other life, I was given a mental illness diagnosis. I thought my diagnosis was depression, and it wasn’t until many years later I read my case notes and found I’d been written off with a diagnosis of Chronic Schizophrenia. Perhaps I was fortunate in that I didn’t know my diagnosis until long after I’d left the mental health system to lead a full, productive life.

I didn’t know during years of feeling awake and alive again on no medication that I needed to remain on medication for life to prevent ‘relapses’.

I didn’t know during years of happy marriage, and while sharing many precious times with close friends, that I had an incurable illness which brings about social isolation.

I didn’t know when I returned to study and got a first-class degree that I’d got an irreversible brain disease leading to severe cognitive deterioration.

I didn’t know, until I looked it up in psychiatric textbooks, that people with the form of schizophrenia I’d been diagnosed with (simplex) are likely to end up as vagrants. (Well, I suppose there’s still time for that. I’d better not push my luck too much).

 

 

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More support and understanding needed for people wanting to try a no meds approach

pills_medicationI’m concerned about the medicalisation of life; over-prescribing and how sometimes normal difficult emotions are (mis)diagnosed as an illness requiring medication. I expressed this view on twitter and said how I think Dr Joanna Moncrieff does make some valid points. Immediately I was accused of pill shaming, lack of empathy and insulting people who suffer from real deep depression.

Here is the article in the Telegraph which triggered the twitter responses to me after the psychiatrist Dr Alex Langford had put up a link to a similar article – his blog about this topic is here. The media is often insensitive in its choice of language. I can see why ‘happy pills’ would annoy some people. This wasn’t my choice of words so I won’t try to defend a phrase I don’t use. ‘Happy Pills’ or ‘antidepressants? Call them what you will. They didn’t make me happy and they increased my depression. But adopting a critical approach to psychiatric medication does not automatically amount to criticising those who take pills. Isn’t the valid point being made in the Telegraph articles that there is over-prescribing, and sometimes the (mis)diagnosing of human experience for a ‘depressive illness’? The increase in prescriptions for depression gives rise to genuine concern and I think Joanna Moncrieff is right to point this out. I struggle to see how expressing my agreement with this makes me a pill shamer.

So what does pill shaming mean? ‘Pill shamers’, I am told, don’t understand what ‘real’ depression is and think it’s just a sad mood that can easily lift. But I do know, only too well, that suffering and despair is very real. It can be a devastating, gut-wrenching experience whether it’s a normal reaction (as in the normal grief process, to use just one example) or goes beyond our perception of what is ‘normal’. Pill shaming, I am told, means demeaning people who seek help and take pills for depression. Shaming and demeaning anyone for taking pills is something I would never do. (After all, I took pills, for depression and heaven knows what else, for five years). Maybe meds helps some people and not others. There is no shame in taking them or in not taking them (though hopefully both through informed decisions). But let’s not forget, too, that people choosing to come off pills are often told they’re ‘ill’ and have long been made to feel they are doing something wrong, dangerous or shameful in making that choice. More support and understanding is needed for people who do want to try a no meds approach.

I would have liked to engage in constructive debate about this important topic but found I couldn’t get beyond trying to defend my views against the strongly felt accusations of pill shaming. This has happened to others before, and often it silences people and hinders much needed discussion, as expressed in this blog here. I’m aware that speaking out against the use of medication and the medical model in psychiatry upsets and angers a lot of people, not only some psychiatrists but people undergoing psychiatric treatment. It is the latter group with whom I empathise and I hope I do always remain sensitive to their feelings in the ways in which I express my views. But I MUST speak out. People have been, and are being, harmed by the medicalisation of their problems. A rigid application of the medical model almost destroyed me. I’m not antipsychiatry, I’m anti-bullshit – and psychiatry did throw a lot of that at me.

My Headingley LitFest Event – The Dark Threads

20140325_204009Tuesday 25th March was a big day (or rather evening) for me. I gave a talk at Oxfam Bookshop (as part of the Headingley Literature Festival) about my experiences in High Royds Hospital, as told in my memoir ‘The Dark Threads’. Of course, remembering how things had gone well on other similar occasions helped a lot, but I did still did have some pre-event nerves. Throughout the day my mind  kept going into collywobble mode and throwing up a lot of scary ‘What ifs..?’

What if I lose my vision in the middle of it? This wasn’t as daft as it sounds. Every now and then I get ophthalmic migraines which come on without warning and they severely affect my eyesight for a while. Sometimes I go a long time without having them, but once I get one they often come in clusters a couple of days apart and I’d had one two days earlier. Other ‘What ifs?’ were What if in the middle of my talk I urgently need the loo? feel sick? go dizzy? lose track of what I’m trying to say mid-sentence and dry up? What if the audience gets bored and start leaving? What if nobody turns up and I’m staring out at empty seats? Or what if too many people come and there’s not enough room for them? What if..? What if…? What if…?

Fortunately my ‘What ifs?’ proved unfounded, except for one. Over forty people turned up. This meant some of the audience had to stand, and a few had to stand round a corner barely within earshot of me, but it was manageable. In fact, I’ll be bold enough to say it was more than just manageable. The evening was a success.

I spoke for about fifty minutes, followed by a question and answer session. The evening was then rounded off with coffee and biscuits. I’d tried to plan a ‘balanced’ talk – a mixture of grim parts and humour. Most of the extracts I read from ‘The Dark Threads’ were fairly light-hearted, though some with an undertone of black humour. I didn’t want to downplay the horrors of the mental institution experiences for myself or anyone else but neither did I want to make everyone feel depressed rather than inspired.  I wanted to get across what I feel are important things to say about psychiatry, relating both to the past and now, but at the same time I didn’t want to be ‘preachy’. After all, this was part of a literature festival and I wasn’t speaking to a roomful of psychiatrists!

The second part of my talk was about the writing process and getting published. It included topics such as how writing for therapy and writing for publication are two different things (though there can be some overlap), the importance of truth in memoir but having to accept the fallibility of memory and the need to protect peoples’ privacy by changing names and perhaps physical descriptions of people, how I got published and how I became confident enough (ahem) to give talks. Actually, as has happened often before, I did feel confident enough to enjoy doing the talk once I began. The audience seemed wonderfully attentive and asked me lots of questions afterwards.

During the coffee and biscuit time, I sold lots of books, and chatted to many interesting people. I do hope that everyone else enjoyed the evening as much as I did. It does seem so, because feedback has been wonderful. When I get my next pre-event nerves I’ll remember this and reassure myself that, yes, I can do this. Despite all the problems I’ve had in the past with shyness/social anxiety, I CAN talk.

Perhaps we all can do more than we think we can if only we believe this is so.

 

 

Misdiagnosis? Schizophrenia? Emperor’s new clothes?

Is talking about being misdiagnosed with schizophrenia like trying to sew sequins on the Emperor’s new clothes?

As regular readers of my blog might know, in my teens I was diagnosed and treated for ‘chronic schizophrenia’ on the basis of so-called negative symptoms, such as social withdrawal, flattened emotions and lack of interest in things. The situational reasons for these were not taken into account during five years of treatment; neither life events nor the greatly worsening of these so-called ‘symptoms’ by medication. I’ve been fine since I managed to get myself off the neuroleptic drugs and out of the psychiatric system many years ago.

Nowadays people (including my publishers, psychiatrists and others who have read my memoir and those who know me) say that I was misdiagnosed with schizophrenia.  Although I sometimes say this, too, I’m becoming increasingly uncomfortable with the way it seems to imply that there is an illness called schizophrenia and that others suffer from it.  I do believe that I never did have ‘schizophrenia’ – but does anyone? Is there such a disease?

Saying I was misdiagnosed also enables psychiatrists to concede that there are incompetent practitioners while they point out that doesn’t mean there is something wrong with psychiatry as a whole or that what happened to me would still happen to someone today. For example, click here to see review of The Dark Threads by Dr Stephen Ginn. My view is that there was, and still is, something fundamentally wrong with psychiatry and its rigid adherence to the medical model with its heavy drugging, damaging treatment and the claims that the schizophrenia label has a scientific basis.

On the other hand, if I don’t say I was misdiagnosed, some people think I must then have recovered from schizophrenia (whereas what I needed to recover from was the treatment). I would love to offer hope to others, but I am anxious to avoid the false and dangerous implication that anyone diagnosed with schizophrenia should be able to come off their medication and build up a life for themselves, as I was able to do. Unfortunately some people can’t, though it doesn’t mean they are less ‘strong’ than me, or that they actually do have an illness called ‘schizophrenia’.

Maybe I’m wrong to say I was ‘misdiagnosed’. But can you see my dilemma? Perhaps every diagnosis of ‘schizophrenia’ is really a misdiagnosis. It certainly makes sense to me to agree with those who see good reasons for the schizophrenia label to be abolished, such as the Inquiry into the ‘Schizophrenia’ Label. Meanwhile, we ‘psychiatric system survivors’ have to struggle to express ourselves with inadequate terminology. This being so, I hope that people can understand what I mean.

I’m over here

I’ve been interviewed over at Miriam Drori’s blog, An’ de walls came tumblin’ down.

Miriam, a writer, runs an excellent blog about writing, social anxiety and other topics. She kindly invited me as a guest to her blog to talk about the experiences described in my memoir ‘The Dark Threads’ and their aftermath.

You can see the interview by clicking here.

And please also browse around on Miriam’s blog while you’re over there; it’s well worth visiting.

Waiting for Morning

It’s two in the morning. A 15-year-old girl roams the streets of a rough council estate, wondering where to spend the night.  She climbs the stairs in one of the blocks of shabby, high-rise flats, and sits near the top. It’s cold and draughty in the stairwell, but better than being outside. She asks herself if going back home would be safer than staying out all night. Maybe it would be. Maybe it wouldn’t.

I’ve been thinking a lot lately about homeless young people. That girl on the stairs waiting for morning was me. But this isn’t about me. It’s about young people whose lives make the experiences that I had seem like a picnic. It’s about a social problem that exists today and it needs our urgent attention.

Are you aware that the UK today has a youth homelessness problem? A survey commissioned by the CSC (Consortium for Street Children) showed that while 61% of people thought street children were prevalent in Africa and Asia, only 13% saw it as a serious problem in the UK. An estimated 100,000 children run away in Britain each year, many of whom experience sleeping on the streets. As Sally Shire, Chief executive of the CSC says: ‘Whether they are a runaway from Derby or a street child in Delhi the factors that drive children to the streets are similar.’

The true extent of youth homelessness is masked because only young people in contact with services are counted. The ‘hidden homeless’ include those living in temporary hostels or sofa surfing (staying for a night or two in different people’s houses and constantly moving on). These people often do sleep outside but not every night. Also affecting statistics are the different age limits on how organisations define youth.

Do you remember being a teenager? It’s often a time of trouble and turmoil, isn’t it? It can be difficult enough coping with being a teenager without the severe problems of homelessness added on. What would that do to self-esteem and developing a sense of identity?

There are many reasons why a teenager might become homeless: bullying, dysfunctional family relationships, violence, abuse, poverty and lack of affordable housing. Not all run away, some are ‘kicked out’ by their parents. Also, they might be the offspring of homeless adults, or those leaving care, having come of age and therefore no longer the responsibility of children’s services.

The most common reason why a young person might become homeless is relationship breakdown with parents, and this often involves physical, emotional and sexual abuse. A large number of this group are the adolescent ‘runaways’, so called because they purposely leave family homes, or they run away from child protection services, psychiatric units or foster homes.

Many who run away are ‘situational runaways’ who leave after an argument with a parent or carer and then return a few days or weeks later. In some instances, particularly those where ongoing domestic abuse is intolerable, this pattern repeats itself but with increasingly longer periods of absence until these teenagers eventually become part of the chronic homeless population, sleeping rough or in hostels.

Of course homelessness is a serious matter whatever the age group, but if we can tackle this issue when people are young, we may, hopefully, prevent a future generation of long-term homeless people.

One of the ironies is that those who run away from abusive home environments face as much, if not more, of the same dangers on the streets that caused them to run away. Perhaps, despite this, they believe they have more control over their lives than remaining where they know they will continue to be abused.

Obviously the risks that being homeless brings are tremendous. These include the possibility of becoming physically and mentally ill due to exposure to cold, hunger, fear, sleeplessness, lack of hygiene facilities, constantly facing the danger of being assaulted, raped, and perhaps even murdered. Survival strategies on the streets include begging, stealing, and things that increase risks, such as prostitution and seeking temporary relief in drug or alcohol use.

So how does it feel to be a 13 year old girl sleeping in the rain at the back of Tesco’s? How does it feel to be young and homeless, trailing the streets looking for a place to sleep? Let’s think about it tonight when we’re in bed, safe and warm. And let’s try to imagine it now, how it might feel to sleep in doorways, in abandoned buildings, and on park benches in the dark. Do teenagers actually sleep in these situations? Maybe some of them do through sheer fatigue, but I’m sure others spend their nights too afraid to sleep. That’s why I’ve titled this post ‘Waiting for Morning’.

Why don’t they get a job or go back home or seek help from charitable or statutory services? It’s a myth that most homeless teens could easily improve their situation. In these days of high unemployment, it’s almost impossible for young people to get a job who lack educational qualifications and experience, as well as having no fixed abode. Even if they do find some work or can obtain benefits (and of course that’s only those who are legally old enough), finding rented housing, affordable on a low income, often proves an insurmountable problem. Going home is not a feasible option if it means returning to more abuse.

Some of the homeless teens who approach charities in search of at least a temporary night shelter have to be turned away due to lack of facilities. This is especially likely now with the economic crisis and cuts in funding to charities. A strong fear that seeking help from statutory social services might result in being sent back to an abusive home keeps some teenagers lying low. We have to remember, too, that many of these kids have been badly treated and let down by every adult they’ve met, so their lack of trust is understandable.

Homeless teens on a downward spiral who find their way into the psychiatric services may end up with a stigmatising diagnosis, and the effects of damaging treatment, to add to their problems. Diagnoses such as schizophrenia or personality disorder are often used to describe what are really reactions to ongoing traumatic experiences, such as homelessness, preceded by the trauma of childhood abuse. My work for a mental health charity includes supporting people whose post traumatic stress disorder has been compounded, if not solely caused, by their experiences of the psychiatric services. I think that teenagers who feel it’s safer to trade their bed in a psychiatric unit for a bench in the park may not be entirely wrong.

So what is being done? To answer this question I thought about what is available in my own locality, Leeds. The largest youth homelessness charity in the UK is Depaul UK which, along with Barnardo’s Future Project, runs Leeds Nightstop. This is a scheme providing emergency accommodation to homeless teens within the homes of approved volunteers. It’s an attempt to break the cycle of youth homelessness by giving the young person a safe place to stay for a few nights, whilst trained staff work with them to try to sort out a long-term solution. Family mediation is also offered, which is appropriate for at least some young people.

Nightstop is just one example of the kind of help that might be offered in Leeds and other cities. Charities like this one do enable some young people to get off the streets if a place is available and if a longer term solution can then be found.

You may have found much of this post depressing, and not without a touch of my own cynicism. But I’m passionate about the need to raise awareness of the complicated issues of youth homelessness, without sugaring the pill. It’s not all bad. Many homeless charities can cite success stories from teenagers they’ve helped.

In early spring, a night of frost, rain, wind and hailstones bombarded my garden. What a pathetic sight the morning brought. The recently-opened daffodils that lived in a tub in my garden looked beyond hope, their heads drooping low. But the sun came out and gently warmed them. Gradually, over time, they not only survived but turned into the loveliest daffodils you could see.

Who’d have thought that those wilting plants had the potential to live, grow and bloom, given the right help and circumstances? Do you believe that our homeless youth have such potential, too? YES, they do. I know it.

I feel Angry

I feel angry after reading On Becoming a Counsellor (A Basic Guide for Non-Professional Counsellors) – Eugene Kennedy and Sara C Charles (Newleaf, 1990). Okay, this is an old book, the version I’m referring to published in 1990 (first published 1977), but unfortunately these same attitudes are still around.

In On Becoming a Counsellor the authors place much emphasis on being aware of the psychiatric diagnosis of the person they are trying to understand. They state that ‘Non-professionals should have some knowledge of the major classification found in the DSM-111-R [Diagnostic and Statistical Manual of Mental Disorders]’ (p.134), and they go on to say: ‘Counsellors, especially those who have not had extensive training, can only improve their chances of being truly helpful by acquainting themselves as thoroughly as they can with the ever developing insights of contemporary diagnosis.’ (p.138).

I have no quibble with the idea that it would probably be useful for helpers to gain knowledge of the diagnostic categories that psychiatrists use. This might help in understanding the experiences of clients who are, or have been, psychiatric patients (in England or the USA) and to consider how such stigmatising labelling might be affecting them. However, I believe it is unhelpful, even dangerous, to try to fit a client into a diagnostic category (or to accept unquestioningly a diagnosis given by a psychiatrist). This could lead to generalisations about the individual, misinterpretations of the client’s speech or behaviour in the light of the diagnosis, and seeing an ‘illness’ rather than a person (none of which is beneficial to either a client or a counsellor!).

Examples of what (in my opinion, though obviously not the view of the authors) is wrong with putting people into these categories are apparent throughout this book. The authors talk about ‘paranoids’, ‘obsessive-compulsives’, ‘hysterics’,  ‘antisocial personalities’, ‘schizophrenics’, ‘borderlines’, ‘narcissists’, ‘depressives’. I started giving the page numbers where each of these terms had been used but I gave up because this terminology appeared on so many pages! It’s as if the person has become no more than a diagnostic label! Moreover, once the person has disappeared beneath a set of symptoms, the authors then make sweeping generalisations, through which they encourage helpers to view particular clients. Here are just a few examples:

‘Histrionic personalities have enormous difficulty with love and intimacy, with the substance of what it means to share deeply with another person.’ (p.245).  ‘Antisocial personalities may sound sincere in expressing regret but this may be discounted; it is a feeling of which they are incapable.’ (p.260).  ‘Antisocial persons do not feel much at all.’ (p.263).  ‘Schizophrenics experience great difficulty in relating to others. They have few friends and they seem to distrust other people.’ (p.274).  ‘Paranoids generate a kind of suspiciousness that keeps other people on guard’ (p.283). ‘The almost unique pressure exerted by borderlines can seem as heavy and stifling as the weight of the sea. Narcissists require proper identification because of the severe complications they can introduce into, for example, the already challenging work of marriage counselling. (p.295).  ‘Obsessives ask questions but they are not really looking for answers’. Likewise, ‘Obsessives like to throw counsellors off guard, to get them to explain something they have said or to defend some other aspect of their professional activity’ (p.231).

Counsellors are warned to prepare in advance for the possibility that persons coming for help will test out their reactions right from the start (p.99).  This may take the form of asking questions about the counsellor’s training, expertise or credentials. We are told that questions such as these should either ‘be accepted and not responded to directly’, or a counsellor may say, ‘You really want to get some information about me, don’t you?’ or ‘It seems important for you to examine my credentials.’ (p.99/100).  But surely it is only right and sensible that a client might want to ensure at the outset that the person to whom they are going, and paying, for counselling is suitably experienced and qualified. Why should a counsellor perceive this as an attack? Why on earth shouldn’t the counsellor be happy to answer these questions?

On the one occasion when I went for counselling (which, unfortunately, turned out to be a very off-putting experience), I think my counsellor must have been reading books such as this one. When I first met her, I asked some questions about the kind of counselling (psychodynamic) she was offering. My questions were dismissed with, ‘Talk about you, not me. That’s what you’re here to do.’ And then she fell into a long silence (which greatly puzzled me as I had never come across this before). Fine, talking only about me if the counselling was already underway, but, hey, wait a minute. I thought this was supposed to be a brief, initial discussion before proceeding. Never having had counselling, I needed to know more about her approach before going ahead. Somehow I had (quite unintentionally) got off on the wrong footing with her from the beginning. She seemed defensive and annoyed with me. (Perhaps I was sitting in her chair).

In a section about ‘hostile clients’ the authors say: ‘Clients who enter the room and seat themselves in the chair that is obviously meant for the counsellor give a clear message that can’t be ignored.’ (p.99).  I’m left wondering what a chair that is ‘obviously meant’ for the counsellor looks like, compared with a chair that is ‘obviously meant’ for the client, and why a counsellor should read hostility into a client who can’t see, or understand, that the chairs are and ‘need’ (?) to be different.

The authors tell us how certain clients are ‘good at making other people feel’ in a certain way. For example, ‘These people [“paranoids”] have the power to make us uneasy … They make other people argumentative and resentful.’ (p.283).  We are told that as helpers we should keep asking our self, ‘What is this other person doing to me?’  I agree that we need to be aware of feelings in ourselves that might arise with a particular client, but I think it would be better to ask our self,  ‘Why am I feeling like this?’ instead of thinking, ‘This client is making me feel like this. Oh yes, I know why. She is a chronic schizophrenic and that’s what these schizophrenics do.’ If we keep thinking clients are ‘making’ us feel a certain way, perhaps it is ourselves we need to be taking a closer look at. (Not that I have any room to talk, I’ve just realised. All the way through reading this book I kept breaking off to say to my husband, ‘These authors are making me feel so angry!’).

By the time I’d finished reading this book there was steam coming out of my ears. I decided to move on to another library book, one which I ‘knew’ wouldn’t upset me because it was written by Carl Rogers. Surely there’d be nothing in A Way of Being that would be disagreeable to me. Yes, well… I’ll save Carl Rogers for my next post.