The voices in my head: Eleanor Longden’s ‘psychic civil war’…

This blog has featured a lot of discussions about mental health. This is because I have served my time as one of societies psychiatric policeman- an Approved Social Worker in England, and a Mental Health Officer in Scotland.

I started out 25 years ago with a clear idea about mental illness- people who were ill did not always realise that they needed help. It was my job to try to make sure they got help. I had all sorts of different ideas about what this help should look like, and lots of frustrations with the psychiatric machine that I had to deal with, but fundamentally, the idea of mental illness itself was a stable reality within what I did.

Sure, we challenged the medical model (Illness-diagnosis-treatment (maintenance)) as this failed to take into account the social context in which some ones illness develops, but the dominant paradigm that affected work with people with ‘severe and enduring’ mental illness remained firmly medicalised. It was the only way to make sense of the psychic chaos we were faced with – hospitalise, medicate and sanitise it out of our immediate circle.

Increasingly I became a skeptic- not just of the machine, but the actual underlying concepts of ‘mental illness’.

It started many years ago when faced with young men and women who, once diagnosed with schizophrenia, were condemned to half-life at best. The medication we gave them to control their symptoms (particularly the ‘voices’) often did not work, and had such destructive side effects that everything would slowly slide downwards into a kind of suppressed humanity. Is this really the best that we could do?

Alongside this other movements were emerging. They were dangerous and threatening. One of these grew up in and around Manchester, where I was working, and was called ‘The Hearing Voices Network‘. It dared to suggest that hearing voices was a NORMAL human experience- not a symptom of ‘illness’. Rather it was a way of coping with trauma for the most part.

Rather than pushing the voices away, suppressing and chemicalising them, the HVN suggested we needed to embrace them, engage with them, understand them- even the destructive aggressive ones.

More recently we have has another movement- around the idea of ‘recovery’- living fully in the presence (or absence) of the ‘symptoms’ of mental illness.

None of these are easy concepts- they are really stories of life long journeys for people experiencing one of those ‘psychic civil wars’ that all of us go through to some extent.

What convinces me most about these revolutionary ideas in relation to mental health issues is the HOPE that they bring. The best that psychiatry can offer to many is ‘maintenance’. All the so called break-through s of the pharmacological machine that spend millions convincing doctors to use their new wonder drug have done little to change this. Suddenly however, people are saying clearly- The treatment you are offering me is NOT WORKING. I want something better for my life. 

That is not to say that there are not people in the system who see it this way too. I heard this wonderful TED talk the other day. It is saturated with hope, and the raw joy of life…

Enjoy;

DSM-5; step into the straight-jacket…

DSM-5

 

It is out today.

Back in February, I wrote a long piece reflecting on a number of issues thrown up by the new American Psychiatric Association edition of the Dignostic and Statistical Manual of Psychiatric Disorders. I confessed to considerable skepticism and concerns into the way this hugely dominant document had been drafted. Here is some of what I said

 It matters on an individual level because all of us will be affected by mental disorder. One in four of us will be diagnosed according to one of the classifications above, so even if this is not you it will be someone you love or someone you work with. Lots of us feel a strange relief when distress is given a name – it suggests understanding, companionship, a removal of uncertainty and the possibility of treatment. However, for many these can easily become self perpetuating and destructive as they have the effect removing responsibility, ownership and eventually hope of recovery, which some never find again.

It matters too on a sociological level. Our societies are increasingly regulated by psychiatry. We medicalise, medicate and plan ‘evidence based interventions’ into all sorts of human variation. This may simply amount to the application of science and knowledge to the alleviation of mental illness, but the question is whether this is ‘healthy’? Are we seeking to make a world in which the mess and gristle of life is edited out, tidied away, chemically suppressed? And is it working?

Psychiatric classification almost always demands treatment, so step forward the drug companies, with another product to push by fair means or foul. All those countless drug rep funded lunches, gadgets, even holidays, in the name of publicity for the next wonder drug. Even if the drugs do half of what they promise there is no doubt that our population is increasingly medicated.

At the time I wrote a list of what I hoped might form the new direction within mental health care- which I am convinced will be looked back on by future generations with shame and anger;

Away from ‘illness’ towards ‘distress’

Away from ‘symptoms’ towards understanding that we develop different  means of coping with this distress.

Away from restrictive labels towards listening to individual experience.

Away from medicalised interventions, towards encouragement and support of individual recovery.

Away from simplistic distinctions between ‘psychosis’ and ‘neurosis’ towards a greater interest and understanding of the effect of trauma.

Away from segregation and ‘otherness’ towards seeing mental distress as an essential part of the human experience and as such, part of all of our experiences.

Away from ‘maintenance’ towards hope and acceptance.

I was not expecting quite so much public and professional resistance to DSM5- even to the point of questioning anew the core concepts of ‘mental illness’. This from here;

Critics claim that the American Psychiatric Association’s increasingly voluminous manual will see millions of people unnecessarily categorised as having psychiatric disorders. For example, shyness in children, temper tantrums and depression following the death of a loved one could become medical problems, treatable with drugs. So could internet addiction.

Inevitably such claims have given ammunition to psychiatry’s critics, who believe that many of the conditions are simply inventions dreamed up for the benefit of pharmaceutical giants.

A disturbing picture emerges of mutual vested interests, of a psychiatric industry in cahoots with big pharma. As the writer, Jon Ronson, only half-joked in a recent TED talk: “Is it possible that the psychiatric profession has a strong desire to label things that are essential human behaviour as a disorder?”

Psychiatry’s supporters retort that such suggestions are clumsy, misguided and unhelpful, and complain that the much-hyped publication of the manual has become an excuse to reheat tired arguments to attack their profession.

But even psychiatry’s defenders acknowledge that the manual has its problems. Allen Frances, a professor of psychiatry and the chair of the DSM-4 committee, used his blog to attack the production of the new manual as “secretive, closed and sloppy”, and claimed that it “includes new diagnoses and reductions in thresholds for old ones that expand the already stretched boundaries of psychiatry and threaten to turn diagnostic inflation into hyperinflation”.

Others in the mental health field have gone even further in their criticism. Thomas R Insel, director of the National Institute of Mental Health, the American government’s leading agency on mental illness research and prevention, recently attacked the manual’s “validity”.

And now, in a significant new attack, the very nature of disorders identified by psychiatry has been thrown into question. In an unprecedented move for a professional body, the Division of Clinical Psychology (DCP), which represents more than 10,000 practitioners and is part of the distinguished British Psychological Society, will tomorrow publish a statement calling for the abandonment of psychiatric diagnosis and the development of alternatives which do not use the language of “illness” or “disorder”.

The statement claims: “Psychiatric diagnosis is often presented as an objective statement of fact, but is, in essence, a clinical judgment based on observation and interpretation of behaviour and self-report, and thus subject to variation and bias.”

All this comes starkly to light when we hear the voices of experience;

“Strange though it may sound, you do not need a diagnosis to treat people with mental health problems,” said Dr Lucy Johnstone, a consultant clinical psychologist who helped to draw up the DCP’s statement.

“We are not denying that these people are very distressed and in need of help. However, there is no evidence that these experiences are best understood as illnesses with biological causes. On the contrary, there is now overwhelming evidence that people break down as a result of a complex mix of social and psychological circumstances – bereavement and loss, poverty and discrimination, trauma and abuse.”

Eleanor Longden, who hears voices and was told she was a schizophrenic who would be better off having cancer as “it would be easier to cure”, explains that her breakthrough came after a meeting with a psychiatrist who asked her to tell him a bit about herself. In a paper for the academic journal, Psychosis, Longden recalled: “I just looked at him and said ‘I’m Eleanor, and I’m a schizophrenic’.”

Longden writes: “And in his quiet, Irish voice he said something very powerful, ‘I don’t want to know what other people have told you about yourself, I want to know about you.’

“It was the first time that I had been given the chance to see myself as a person with a life story, not as a genetically determined schizophrenic with aberrant brain chemicals and biological flaws and deficiencies that were beyond my power to heal.”

Longden, who is pursuing a career in academia and is now a campaigner against diagnosis, views this conversation as a crucial first step in the healing process that took her off medication. “I am proud to be a voice-hearer,” she writes. “It is an incredibly special and unique experience.”

In the 1960’s the liberation battles were about race, the 1970’s gender, the 1980’s sexuality. The 1990’s we began to think we had sorted it all out and in the 2000’s we discovered that perhaps we had not.

This decade, let us take on the oppressive machine that makes madness out of the variety of human distress.

Being ‘spiritual’: it is bad for you?

sundial and one of the three Lichfield spires

“I am not religious, but I am spiritual.” How many times have you heard someone say this? I suppose, given the devaluation of the word ‘Christian’ with western culture, and the post-modern slide into an elastic pluralistic individualism it is one of those sentences that increasing numbers of us would use to describe themselves (as can be seen from the recent Census data.)

Despite my continued attempts to hold to the ways of Jesus, the idea of a religion-less spirituality appeals to me too; leaving behind all the baggage and rigidities of proscribed doctrine and setting off on my own spiritual adventure…

However, Sam Dawlatly kindly  sent me a link to a story in the Telegraph. Here are a couple of quotes;

People who said said they had spiritual beliefs but did not adhere to a particular religion were 77 per cent more likely than the others to be dependent on drugs, 72 per cent more likely to suffer from a phobia, and 50 per cent more likely to have a generalised anxiety disorder.

They are more likely to suffer from a range of mental health problems than either the conventionally religious or those who are agnostic or atheists, found researchers at University College London.

They are more disposed towards anxiety disorders, phobias and neuroses, have eating disorders and drug problems.

In addition, they are more likely than others to be taking medication for mental health problems.

Professor Michael King, from University College London, and his fellow researchers wrote in the British Journal of Psychiatry: “Our main finding is that people who had a spiritual understanding of life had worse mental health than those with an understanding that was neither religious nor spiritual.”

…The researchers concluded: “We conclude that there is increasing evidence that people who profess spiritual beliefs in the absence of a religious framework are more vulnerable to mental disorder.

“The nature of this association needs greater examination in qualitative and in prospective quantitative research.”

What is going on here then?

Firstly, we must look at the numbers a bit more closely- the study is not huge even though statistically significant;

The study was based on a survey of 7,403 randomly selected men and women in England who were questioned about their spiritual and religious beliefs, and mental state.

Of the participants, 35 per cent described themselves as “religious”, meaning they attended a church, mosque, synagogue or temple. Five in six of this group were Christian.

Almost half (46 per cent) described themselves as neither religious nor spiritual, while the 19 per cent remainder said they had spiritual beliefs but did not adhere to a particular religion.

Members of this final group were 77 per cent more likely than the others to be dependent on drugs, 72 per cent more likely to suffer from a phobia, and 50 per cent more likely to have a generalised anxiety disorder.

They were also 40 per cent more likely to be receiving treatment with psychotropic drugs, and at a 37 per cent higher risk of neurotic disorder.

The interesting thing is that this study is in contrast with a lot of previous research about the impact of religious belief on measures of psychological and sociological health- which sees faith has having clear benefits, even if more recent research has suggested that some of the self esteem benefits depend on the wider societal norms towards religiosity.

Accepting that this research may simply be a rogue study, there seem to me to be a few possible reasons why those who consider themselves Spiritual (but nor Religious) (SBNR) might appear to be vulnerable as a wider group.

Self selection

The link may well not be causal, but correlational. Perhaps those of us who are spiritually seeking outside the edges of organised religion are doing so because life has driven us there. Perhaps even our negative experiences of church has driven us there. It is hardly surprising that we might be seen to be stressed, troubled and even unwell. These things are not necessarily measures of the futility of the journey, but more part of any real human experience- part of the process of changing, becoming, learning to inhabit our own skin. We learn far more about ourselves in crisis than we ever do in prosperity.

The question might remain as to why this is NOT also the case for the religious? Are they not also  being challenged, shaped and changed by their contact with scripture/teaching/existential challenge? All I can say is that in my experience in Churches, this is rather rare. The pews offer comfort more than adventure.

In this sense, the idea of spiritual travellers on the road, nursing wounds on the way seems not necessarily a negative- rather it offers hope for our humanity. Despite it all, we still strive for connection with the divine.

Belonging

A lot of the presumed benefit of religion at  both a sociological and psychological level seems to be the given sense of belonging, of inclusion and connection to a wider family. Even accepting that in-groups can have all sorts of other problems, this benefit appears to be rather universal. It should not be surprising then that those who are attempting spirituality without community do not experience this benefit.

I have written elsewhere about my conviction that we experience the divine through scripture, through revelation, but perhaps most through community. We humans were made to love- and this is not an abstract proposition divorced from the mess of human contact. Nothing strips us bare, opens us up, sustains us, breaks us down, wounds us, heals us, like community. I also beleive that our approach to theology should also be one of ‘small theologies’ (HT Karen Ward) worked out in community- in respect of ‘big theologies’, but not enslaved to them.

Having said that, it seems that there are surface benefits too in just demonstrating some kind of collective respectability- even if this depends on a wider societal respect for the religious badge that we wear. I confess to less concern about this kind of religiosity. It sounds too much like the stuff that Jesus had no time for.

The lesson here then might be to encourage our spiritual seekers to connect with one another. In these times of total (but fleshless) communication, the deeper community connection described above is a rare commodity, and where it happens it is a precious flame that we should nurture.

Believing

Finally, I have been thinking about the nature of faith itself. We have many models- faith as journey, as destination, as therapy, as national identity, as absolute truth, as means of rescue from hell. From the outside all of these organised expressions of faith appear rigidly codified, doctrinal, dogmatic. They seem to demand blind observance of rules and regulations often policed by male power. Small wonder that we would be suspicious about joining such an organisation. Small wonder that pilgrims remain outside the sites of pilgrimage.

However, I am reminded of this;

Spirituality requires context. Always. Boundaries, borders, limits. ‘The Word became flesh and dwelt among us.’ No one becomes exalted by ascending in a gloriously colored hot-air balloon. Mature spirituality requires askesis, a training program custom-designed for each individual-in-community, and then continuously monitored and adapted as development takes place and conditions vary. It can never be mechanically imposed from without; it must be organically grown in locale. Askesis must be context sensitive.

Eugene Peterson

Under the Unpredictable Plant

Perhaps like others who are more comfortable with being SBNR I prefer to regard faith as a journey of engagement with the God-in-all-things. To look for the marks left by Jesus on the whole of creation. But in doing this, It has become clear to me that in order to journey we need a means to travel. We need a road, and shoes to walk it with.

Like it or not, this means of travel is religion.

It is the corrective to the self centred me-first spirituality that can often characterise SBNR journeying. You know what I mean- a pick and mix spirituality tailor made to make me feel better about the choices I have made, and the lifestyle I want to live. A situation where morality and love of strangers are elasticated around our own comfort zone. (Not that these characteristics are not to be equally found in churches of course!)

It challenges us towards connection to others who have journeyed first.

To all of those SBNRs out there- I think you are the hope and the conscience of our generation. The depth and meaning you find in the mess of western civilisation will be recorded in art, law, history and handed on to the generations to come- so may you journey well…

journey's end

Miliband takes on mental illness…

So, Ed Miliband is to tackle the Stigma of mental illness in his next speech, according to the Guardian. Good for him, although he seems to be choosing some rather soft celebrity hate figures to take a swipe at in order to give his speech some punch- Jeremy Clarkson and Janet Street Porter;

With the cost of mental illness to the NHS believed to be around £10bn, Miliband will announce he has set up a taskforce – led by Stephen O’Brien, the chairman of Barts Health NHS Trust and vice-president of Business in the Community – to draw up a strategic plan for mental health in society, in the hope that the next Labour government can begin work immediately on implementing reform.

He will also say that attitudes in society need to change, criticising “lazy caricatures” of people with mental health problems and highlighting recent comments by Clarkson and Street-Porter.

He will say: “There are still people who abuse the privilege of their celebrity to insult, demean and belittle others, such as when Janet Street-Porter says that depression is ‘the latest must-have accessory’ promoted by the ‘misery movement’.

“Jeremy Clarkson at least acknowledges the tragedy of people who end their own life but then goes on to dismisses them as ‘Johnny Suicides’ whose bodies should be left on train tracks rather than delay journeys.

“Just as we joined the fight against racism, against sexism and against homophobia, so we should join the fight against this form of intolerance. It is not acceptable, it costs Britain dear, and it has to change.”

Whilst I welcome the initiative- I feel slightly skeptical about the outcome, even before it begins. I hope I am wrong, but the problem faced by any such review (particularly one led by someone embedded in the NHS) is that its conclusions are inevitably shaped by the set of lens through which we look at the ‘problem’.

It reminds me a little of theology- we inherit a set of beliefs about who or what God is based on our culture, denomination and hermeneutic. These things are useful, valuable, even essential for a while- they are vehicles through which the Spirit travels. But there can come a point when they obscure, restrict, oppress and close down our understandings. For example, if our theology is based on a flat earth created in 6 days a few thousand years ago, then something has to give when we are confronted with the expanding universe.

The mental illness machine is not working.

I say this not in disrespect of the many wonderful people working within the system, but there comes a time when we have to see the machine for what it is- something that more often than not sucks people in, strips them of who they used to be, and replaces this with a new set of roles- patient, schizophrenic, lunatic, depressive, manipulative, unemployable, benefit scrounger.

Then there is the role played by the pharmaceutical companies, competing to push the next wonder drug, and employing a thousand drug reps to flood doctors, nurses and even social workers with half truths about their new product using everything from free toys (pens, flasks, binoculars) to free meals and holidays. The wonder drugs each turn out to be versions of what has gone before- no Lilly the Pink, just more chemical suspended animation to hold people in half lives.

A few months ago I wrote a piece reflecting on the monster that is the new  American Psychiatric Association  Dignostic and Statistical Manual of Psychiatric Disorders, otherwise known as DSM 5. In this, I wrote of my own hopes for change in the system along these lines;

Away from ‘illness’ towards an understanding that all forms of mental illness are caused by mental ‘distress’

Away from ‘symptoms’ towards understanding that we develop different  means of coping with this distress.

Away from restrictive labels towards listening to individual experience.

Away from medicalised interventions, towards encouragement and support of individual recovery.

Away from simplistic distinctions between ‘psychosis’ and ‘neurosis’ towards a greater interest and understanding of the effect of trauma.

Away from segregation and ‘otherness’ towards seeing mental distress as an essential part of the human experience and as such, part of all of our experiences.

Away from ‘maintenance’ (which is a form of medicalised slavery) towards hope.

If Ed can gather some real radicalism from his up coming review, I really hope it will contain some of these ideas.