First published 9/2/16 on www.rufusmay.com
by Rufus May & Elisabeth Svanholmer
A little over a year after the publishing of the BPS Understanding psychosis report we want to reflect on what might happen when we try to get closer to the experience of ‘psychosis’.
In November 2014 The British Psychological Society published a report Understanding Psychosis and Schizophrenia (Rufus was a contributor). Its sub-heading was: ‘Why people sometimes hear voices, believe things others find strange or appear out of touch with reality’.
It aimed to promote psychological understandings of psychosis and in doing so challenged more medical viewpoints. The report was keen to acknowledge that there are different ways of talking about behaviour and experiences that get called psychosis, each with advantages and disadvantages. It included numerous personal reflections on experiences such as hearing voices, having unusual beliefs and psychiatric treatment. It promoted the idea that there is no clear dividing line between what mental health professionals call ‘psychosis’ and other thoughts, feelings and beliefs; rather there is a continuum on which we all lie. It also asserted, that while medication might help some, there is no evidence it corrects an underlying biological abnormality.
For us the report seems to be an example of how members of the community (in this case the British psychological profession) are trying to move closer towards to the experiences of those diagnosed with psychosis.
I (Rufus) was treated in psychiatric hospital for psychosis in London in the eighties. I saw the world very differently to people around me. Amongst other things I believed many people and animals were robots and a gadget had been put in my chest to control me. This was the decade of the brain and at the time, it appeared that biological theories of madness reigned supreme. My parents were told that talking with me about my strange beliefs and ideas would only make me worse and neuroleptic medication was something I would need on a long-term basis.
I disagreed and came off my drug treatment just over a year after I had been started on it. I was determined to manage my mental health in other ways. In the early nineties, when I started studying psychology, I could only find one contemporary book on psychological approaches to psychosis. The rest of the text books in the University of London library, were medical ones taking the stance that psychosis and schizophrenia were uncontested biological diseases.
However since then, psychologists and many other groups, like the Hearing Voices movement, have became more and more confident about the value in getting closer to psychosis and questioning medical viewpoints.
Tension between approaches
The traditional representation of psychosis is that the content should not be listened to.
Rather the views of psychiatrists like Emil Kraeplin and Karl Jaspers have been promoted. They would frame mad or ‘schizophrenic’ thinking as ‘un-understandable’.
Psychiatry has therefore focussed on the form of people’s experiences instead of the content and possible meanings. For example focussing on what type of voices people hear rather than what they are talking about. This detached approach has also been convenient for state governments who have charged the medical profession with being guardians of the mad: those who have been seen as a nuisance and a challenge to the prevailing social order.
This statutory expectation, that the community should be protected from the mad, has had huge consequences for how psychosis has been framed. The general understanding of psychosis is as something dangerous; a fundamentally different and deviant state of mind.
While there have always been people on the fringes of psychiatry – like Carl Jung and R.D. Laing – the dominant paternalistic approach has remained strong. Jung and Laing both maintained that there are meanings in peoples challenging states of mind, and we should be more creative in how we try to help them.
Encouragingly the British Psychological Society’s report on understanding psychosis received a lot more attention in 2014 than it did in 2000 when an earlier version was released. This suggests to us that alternative movements are getting more organised. It also seems that the wider society is gradually becoming more open to different perspectives on how best to understand mental confusion and alternative states of consciousness.
Getting closer to psychosis is controversial
When the 2014 Understanding psychosis report was published, there was an understandable backlash. The report was challenging the dominant idea that schizophrenia or psychosis is a brain disease best treated by drugs (the report asserted that many people find medication helpful but others do not). The report was criticised mainly by people wedded to more biological understandings of psychosis. It hurts to be told the way you are doing things may not be based on facts and that you may be harming the people you seek to help. Such accusations can be – and have been – made from both sides of the debate. When the New York Times published a review of the report, the psychiatrist and psychosis researcher Jeffrey Lieberman wrote a letter asking: What has the New York Times got against Psychiatry?
It is clearly a challenge to try to find ways to introduce more diverse understandings of madness without alienating those wedded to more medical viewpoints. Because psychosis has had a very particular social position in our society, it can be a politically sensitive process, when we try to promote a different stance. In my (Rufus) experience of such awareness raising, a support network is essential to be able to deal with the resulting criticism and challenges.
Meaning making and valuing diversity
For us there seems to be two attitudes that can help us get closer to psychotic experience.
Firstly there is acceptance; it seems essential to become more accepting of diverse ways of perceiving the world. Secondly it seems useful to try to understand and find meaning in psychotic experiences. They are imbued with social and psychological meanings and if we can find ways to explore these meanings together, the experiences may lose their power over us.
Like the neuro-diversity movement in autism, the hearing voices movement argues that hearing voices is not a fundamentally faulty experience. It is just another way to experience consciousness. In many Hearing Voices self-help groups an important value is to respect different understandings and beliefs. In the Open Dialogue Approach to psychosis one of the key principles is tolerance of uncertainty. This means to be able to step back from the urge to find solutions to an uncomfortable situation and also to acknowledge that there is no “one size fits all”. You may not know what the best thing to say or do is; when we start seeing each person and each situation as unique we have to let go of assumptions and generalisations. We cannot use standardized procedures, statistics or manuals to find a way forward. We have to sit with the uncertainty of the unique situation and be open to what may occur.
Finding spaces where we can demystify our fears
A beautiful thing that can happen in Hearing Voices groups is that a space is created, where different experiences of reality are more freely discussed. It seems to us that a lot of problems develop from the fact that there aren’t many spaces in society where we can talk about our fears.
What we fear has power over us. But most of us push away our fears in order to get on with life, fit in, to study, work and have a career and family.
When we push away our fears, they do not disappear – they stay with us, hidden in the shadows where they breathe down our necks. What if we had more spaces like we have found in the Hearing voices groups, to talk about fearful or feared experiences?
I (Elisabeth) like to imagine what the world would look like if we were brought up to face our fears. How would we interact with each other if we were encouraged to talk about our fear of death, of illness, of ageing, of natural disasters and of physical and emotional violence – not as taboos but as natural parts of life?
So much distress and isolation comes from thinking you are on your own with your thoughts and your fears. In a world with many taboos and where normality is very narrowly defined, it is easy to start feeling unsetttled or ashamed by certain thoughts and feelings. We have heard and seen so many judgemental stories about people who are different or weird. Also we are not encouraged to explore our inner world or let our imagination run free. If sexual, aggressive or unusual thoughts come up we may not know how to approach this within ourselves. We can experience these things as unwanted – by society and ourselves – as something that may hinder us in our career or have others reject us.
Exploring the personal meanings of psychosis
It is interesting to consider what the term psychosis means for each of us.
We looked at this in the Hearing Voices group I (Elisabeth) used to attend. It is often the case that other people get to define when we are psychotic and when we are not. In the group we tried to explore what the term ‘psychosis’ meant for each of us. As we went round in the group, we realised how diverse and subjective it was.
One person remembered psychosis as blackouts. Another person defined being psychotic as seeing ninja type people crawling on the roofs. A third person defined it as a total loss of self and experiencing everything as interconnected. I think of myself as psychotic when I experience emotional states so intense that they stop me functioning physically or mentally.
All of us had been through a wide range of unusual experiences apart from those we thought of as psychosis. And we had been defined as psychotic by others at times where we would not have seen ourselves as such. What seem to be the shared indicator for what we thought of as psychosis was that we all associated it with overwhelming fear. Something we did not want to experience again.
Looking after ourselves as we get closer to extreme states
When trying to get closer to overwhelming emotional or mental states, one of the things we have both found helpful, is to practice staying physically grounded and centred.
It may be very frightening hearing about peoples experiences and witnessing distress. It can bring up feelings of powerlessness, overwhelm, panic and confusion. It can be equally exciting when we find threads of meaning, common ground or ways forward. It is easy and tempting to get carried away.
We have both found that using physical movement and breathing exercises can help us not get caught up in the emotional states that come up. When we presented this talk recently at a psychology meeting about the BPS report, we included some stomping exercises for the whole gathering. Just talking and thinking about our minds can sometimes get very intellectual and heady. As a consequence we can disconnect from a valuable resource; our bodies.
We welcome the 2014 BPS report “Understanding Psychosis”; its promotion of listening to the meaning in people’s experiences and challenging the idea that madness is fundamentally different. When these ideas get promoted it can be quite controversial because it questions the dominant medical viewpoint of psychosis as a brain disorder. So we need to support each other with the turbulence that comes from raising awareness.
Hopefully parts of our communities are gradually becoming a little braver at being with unusual experiences and challenging states of mind. We certainly see this happening in many hearing voices groups and networks.
While hearing voices groups appear good places to overcome fears, if we are really going to tackle the roots of our collective anxieties, it seems to us we need wider society to have more ‘fear facing’ spaces. We have found that to sustain a curious and open minded approach to powerful mental experiences (both other people’s and our own) we need to look after ourselves, both physically and emotionally.
The British Psychological society report ‘Understanding psychosis and schizophrenia’ is available free here