Natasha Mitchell: Well it’s that voice in your head again; it’s letting you know you’re tuned to All in the Mind, it’s saying this is ABC Radio National and it wants you to feel welcomed and she says her name is Natasha Mitchell. Now some of us experience relatively benign voices in their head like this one but, for others, they can be a constant and disabling torment.
Rufus May: I think there’s a big cultural fear of voice hearing in the west. If you go to more traditional cultures voice hearing is a much more accepted experience and generally people don’t have a problem when they start hearing voices because there’s a whole wealth of wisdom about how to live with voices. If you go to rural India or parts of Africa 40% or 50% of the population will hear voices and it’s not seen as a problem. I think in our culture it’s a very taboo experience and so what we’re trying to do is create understanding about — these are experiences that up to 10% of the population can have, you can learn to live with the experiences, you need a safe trusting allies to talk to about that experience, and you can build up your confidence and courage and not be a victim of those experiences and learn from them.
Natasha Mitchell: Dr Rufus May is a clinical psychologist with the National Health Service in Bradford in the UK. For some he takes an unorthodox approach, as you’ll hear. It stems from his own experience of being hospitalised in a psych ward as an 18-year-old. Madness, he provocatively says, is when people choose to stop trying to understand you. Dr May and other leading figures in the international Hearing Voices Network gathered at the Recovery from Psychosis conference held in Perth this week. Controversially they’re challenging the mainstream medical orthodoxy that voices are a pathological symptom of schizophrenia with little psychological sense or meaning. There is a real risk here of course of romanticising what can be a frightening experience for people at the height of psychosis. But my guests today are three people pushing the boundaries and encouraging people to enter a therapeutic dialogue with the voices in their head as part of their recovery process.
Dr Sandra Escher is co-founder of the Hearing Voices Movement with her long time colleague at the University of Maastricht, Professor Marius Romme, and they’ve penned a book called Making Sense of Voices – A guide for professions who work with voice hearers.
And Dr Dirk Corstens is a social psychiatrist and psychotherapist in Maastricht who, with Sandra, Rufus and others, has developed a therapeutic approach to working with voices. Dr Rufus May, Dr Dirk Corstens and Dr Sandra Escher, welcome to Australia, thanks for joining us on ABC Radio National.
Dr Sandra Escher you’re a co-founder of what’s called an international movement, really, of the Hearing Voices Movement. What prompted the formation of that movement, over 20 years ago now?
Sandra Escher: Well actually it was a patient that Professor Romme had, I worked together with Professor Romme and this patient didn’t agree with the way he treated her. He didn’t want to talk about her voices and it took her nearly two years to persuade him to take a different attitude and from that way on we started to work. We found that it was revealing and we got a lot of contact from people who were so happy to talk about the voices and we started to develop a way to approach it, to make sense to the experience.
Natasha Mitchell: I mean 20 years ago this was a direct challenge to mainstream medicine’s thinking about the origin and meaning of voices, they are called auditory hallucinations in clinical speak. I mean it still is a challenge as you point out — what was the core challenge at the beginning?
Sandra Escher: To let people accept that the voices were real and that you could use the experience to build up a knowledge and to use it in therapy if needed. Because 2% of normal people hear voices and they don’t need therapy but the people who need therapy we learned that their voices should be used. What is important is that people started to develop themselves; voices stop development and if they learn to have a different attitude they start to develop themselves again.
Natasha Mitchell: Rufus May I want to come to your experience in just a moment but what was the challenge that the Hearing Voices Movement presented to mainstream medicine or psychiatry?
Rufus May: Well hearing voices has always been seen as a symptom of schizophrenia, a biological disease and that the experience in the last 100 years has been seen as a meaningless thing that must be stopped or silenced with strong medication. And what the Hearing Voices Movement was saying was no, actually these experiences can be meaningful, they can be messages about the person’s life, you can actually learn from them. You’ve got to accept them and work with them rather than work against them. So it was a completely different way of thinking really to sort of invite the voices in rather than try and push them away or silence them with numbing levels of medication. Because medication can be helpful in calming emotions down in the short term but if you’re just using it as a cosh it’s not going to be helpful, it’s going to slow the person down and not allow them to develop and learn from their experiences.
Natasha Mitchell: But Rufus and perhaps to you all on what basis do you claim that we should listen to the content of voices as a meaningful and interpretable experience rather than a symptom of say schizophrenia?
Sandra Escher: We learn that over years, I think I have interviewed about 350 people hearing voices, through the interview they learned the message of the voices so it’s the people who give the proof. It helps them to learn to live their lives again as they wanted it. People who are afraid of this approach they see it as that we are very much against the medical model but what we do is challenge the medical model to take one step further.
Rufus May: What Marius Romme and Sandra Escher did was interview voice hearers and they compared people who were coping with the experience with people who weren’t coping. And people who weren’t coping very often had some kind of understanding with their voices, they were able to set limits for their voices, they were talking to their voices and the people who weren’t coping were more afraid of their voices, didn’t want to talk about the experience. And we’ve learned over the last 20 years with self hel-groups how people can move from that group that are not coping to the group that are coping by learning to talk about their experiences, have a dialogue, confront the experience.
Sandra Escher: You know what the problem is in psychiatry mostly people come who can’t cope, so psychiatrists only meet people who are powerless and all their knowledge is based on a small group that can’t cope.
Natasha Mitchell: You really speak, and I’m interested in how you conceive of the voices in your own work because you really speak of them as a rational player. What do you think voices actually are?
Rufus May: One way to describe them is sub-personalities; they might be representing difficult relationships a person has had in the past, so if you’ve had a really strict headmaster who caned you a lot, you might hear his voice. Another way to describe them is as emotions, they might be representing emotions that you’ve cut yourself off from because they are too painful to look at. Another way to look at them is as kind of dream beings, beings from the unconscious who are telling us, have got messages about our emotions. There are different ways to describe voices but I would see them as part of our psychology.
Natasha Mitchell: You come to this discussion with your own experience and some have described your approach now as a fairly maverick approach as a clinical psychologist. But take us back to your own experience at age 18 in 1986 — what happened to you?
Rufus May: Well I’d had some difficult adolescent years, I wasn’t very happy at school, my mother had been quite ill, and then about 18 after my first girlfriend left me, instead of getting depressed I sort of escaped into a fantasy world where I was a spy. I had lots of experiences like the radio talking to me, giving me special messages, and developed a lot of ideas about being involved in a battle between good and evil. And those ideas eventually became quite overwhelming and I wasn’t sleeping and I got quite anxious, and obviously my family thought you’re behaving very strangely. So they asked for help and I ended up getting hospitalised and given a diagnosis of schizophrenia and given strong medication.
So that was my initiation into the world of mental health, and what I found was that people weren’t listening to my experiences, they were just trying to sort of silence them with medication.
Natasha Mitchell: What was that experience of being hospitalised at 18 like?
Rufus May: It was very frightening. It was frightening for a lot of my friends and they didn’t want to come and see me. It was a real sense of powerlessness having your freedom taken away from you so you weren’t allowed to leave. But no one was actually trying to sit with you and make sense of what was going on, you were just being observed. So you felt alienated, the best I could do was try and survive so I developed quite a mad laugh to make myself seem more dangerous than I was because other people seemed quite dangerous in there because they were older than me and bigger, and stronger, and tougher. So I pretended to be more mad that I was to get by, which was great for surviving in hospital but wasn’t very good for adjusting back to community living, or trying to get a job. So I was caught a bit in the system for a while.
Natasha Mitchell: Did you hear voices?
Rufus May: I did hear voices from the TV and radio speaking to me, and reflecting my thoughts, but I didn’t hear disembodied voices that were constantly talking to me like many people I helped.
Natasha Mitchell: But what you were experiencing were for psychiatrists were a classic symptom of schizophrenia; delusions, a sense that objects were talking to you, have messages just for you. And yet you today think very differently about that diagnosis you received, don’t you?
Rufus May: Yeah, well I think it was one way of coping with the depressing situation. I just didn’t find it helpful to be told I had a biological disease; I’d always have to take medication. I just believed that having had some experiences could learn from them, they could become a wit source of wisdom not something to be ashamed of and I believed that I could recover, get on with my life. And I developed a mission really to get back into the mental health system. So I don’t think I had schizophrenia, I don’t think anyone has schizophrenia, I think people who have unusual experiences that are kind of a dissociative reactions to difficult life experiences. So I think schizophrenia is a bit of a – creates misunderstandings. There’s a whole movement to try and get rid of the label of schizophrenia.
Sandra Escher: And also the message that’s given, lifelong illness, lifelong medication.
Rufus May: Yeah, because you can become a schizophrenic, it can become a lifelong role.
Natasha Mitchell: I mean it’s a very radical thing you’re saying for the mainstream, that schizophrenia is in effect a non-existent entity and yet there’s a huge body of research in neurobiology and genetics, in psychiatry dedicated to probing, to understanding what many would consider as a heritable biological illness.
Sandra Escher: There you say something that’s also not true, it’s not heritable, they are doing research but they haven’t proven it yet.
Rufus May: The British Psychological Society produced a report back in 2000 with all the top psychologists contributing to that report, and back then they were saying we need to move away from the diagnosis of schizophrenia. If you carefully look at the scientific evidence it doesn’t tell us anything definite about the cause of people’s experiences, the content of their experiences or the outcome — the three things the diagnosis should tell you about. so in England, in many academic circles it’s not seen as radical to not use schizophrenia and the international…
Sandra Escher: The Americans are more fond of it.
Rufus May: Yes, the country’s more influenced by a drug company.
Sandra Escher: Yes.
Natasha Mitchell: Drs Rufus May, Sandra Escher and Dirk Corstens are my guests today — in Australia this week for the Recovery from Psychosis conference in Perth; all key figures in what’s called the Hearing Voices Network, an international collective of people who hear voices, or are researchers and clinicians, who believe that these voices are meaningful, not simply medical symptoms to be medicated away.
It’s a position many argue is perhaps irresponsible; others find it a relief. This is All in the Mind on ABC Radio National, going global on Radio Australia and as podcast with me Natasha Mitchell.
Dr Dirk Corstens can I come to you. Together with Dr Rufus May you’ve developed a therapeutic approach that involves people dialoguing with the voices in their head — what’s the principle here?
Dirk Corstens: The principle is that we consist of several sub-personalities and from that on we discovered we could talk with these voices and we found out that most voices we talk with display whole characteristics of personalities, of knowledge that people contain about their life history. Why these voices came in our perspective, many voices try to protect people’s emotions for in their lives dangerous situations.
Natasha Mitchell: Dirk, you talk about working with people to explore the motives of the voices and also about developing a more productive relationship between the voices and the voice hearer. It really sounds like you’re treating the voices as a real entity, almost another person.
Dirk Corstens: Yeah, that’s right. When I talk to voice hearers I talk to several persons and these voices they interfere in our communication and they have their own opinions and things they want.
Rufus May: Often living with voices is like living with a wife or a husband that you don’t get on with. It’s a bit like marriage in the 1950s.
Dirk Corstens: It’s like being married without divorce as an option.
Rufus May: So you need to learn how to make peace with that partner.
Natasha Mitchell: Dirk take us then inside a session where you’re getting someone to dialogue with a voice — because you know there’s a very real risk of romanticising the experience of internal voices. I mean people with schizophrenia or with a diagnosis of schizophrenia experience these voices as often vicious, constant, intensely disabling; they can tell a person to harm themselves, to harm other people, that they are worthless — it’s an intensely disabling and unsettling experience. So Dirk how do you work with that situation?
Dirk Corstens: Well one good example is that — let’s call him Fred — came to me and he heard one voice telling him to kill himself, to jump before a train. When I just had a conversation with this voice and this voice started very angry also at me, but after a while told me that Fred was a very anxious guy. And this voice wanted Fred to stand up for himself, become stronger and more forceful. So in this conversation I asked this voice if he thought that his attitude towards Fred helped or not. And he said no, it doesn’t help because Fred is more anxious instead of more stronger. We discussed about how this voice could help Fred to become stronger.
Natasha Mitchell: You are actually sitting down with a person and you are talking to both that person and their representations of the voices in their head with they are experiencing during the session.
Sandra Escher: But I have one thing to say, you assume that all voices are negative about 45% of the voice hearers also hear positive voices and that’s one of the problems. The media mostly talk about only about aggressive, negative voices.
Natasha Mitchell: Well it’s not just the media talks about this; I mean I’ve met lots of people with schizophrenia who have terrible experiences of the voice talking in their head.
Sandra Escher: Yes, but it’s more diverse than you say.
Rufus May: But we’re not glamorising the experience we teach people to interpret the voices symbolically so if a voice is telling someone to hurt someone else we look at what’s the symbolic meaning of that, are you angry about something, do you need to learn assertiveness, to stick up for your rights more. Obviously not to literally respond to the voices and do what the voices are saying. So we are teaching people to — a bit like dream analysis, if you have a nightmare it’s telling you about some repressed fear or anger and you need to process that. So that’s what we’re doing by helping people face those difficult voices.
Natasha Mitchell: Rufus are you actually presenting an overlay, a set of symbols in the way that a Freudian or Jungian analyst might do, or are you letting the person make their own meaning of the voices. What’s the theoretical principle here?
Rufus May: Well we’re doing it together, so if somebody’s got a voice that bullies them and tells them what to do I would suggest to the person, well have you ever been bullied, let’s talk about that. It’s common sense really, but it’s working together.
Dirk Corstens: And we don’t start immediately relating to the voice itself. First we want to learn to know the person and his or her history. And we found that often in 30% the voices relate to what happened in people’s life history so in our opinion these voices are reactions at things that are happening in people’s lives.
Natasha Mitchell: What sorts of experiences, Dirk, and you certainly use an interesting interviewing instrument, don’t you, that’s a little different from what a psychiatrist might generally use when they are sitting down with a client.
Dirk Corstens: Yeah, so at the interview it’s about characteristics of the voices, who are they, do they have a name, many voices have a name; does the voice resemble somebody you have known or know. We ask for the characteristics of the voices, what are they telling you, how do they sound, do they yell or do they whisper. And the most important thing I think is when did the voice start? And often we find that voices started in a moment in their lives when people were overwhelmed by emotions. Voices in our opinion are dealing with emotions that the person himself can’t cope with and we try to change the relationship between voice and voice hearer.
Natasha Mitchell: Do you want to eliminate the voices? Because for many people that’s what they want to do; they want to have them removed.
Dirk Corstens: But that’s an illusion, that’s a dream. That’s I think the critical point about our discussion with medical model oriented psychiatry, they want to silence voices but with the medication only a part of voice hearers voices are silenced. Only one third of the people hearing voices — our hospitals are full of people who hear voices, who still hear voices although they get huge doses of medication.
Natasha Mitchell: Rufus May, do you advocate that people don’t take medications so that you can work with them with their voices?
Rufus May: That’s an informed choice that the person makes. They can choose to use medication or not and I’ll support them with both choices.
Natasha Mitchell: I guess the one risk here is that people hearing your own story — and you did manage to get off medication — that people might feel that if they are benefiting from medication or they are feeling overpowered by their voices that somehow they are a failure if they elect to take medication and not work with the voices?
Rufus May: You can do both, you can take medication and work with your voices, so the two aren’t in opposition to each other. But where somebody thinks that the benefits of not taking medication may outweigh the benefits of taking medication because sometimes there are big health risks with taking medication over a long period — the problems of weight gain, for example, with some of the new antipsychotics and people want to try weaning themselves off them, I’ll support that. But it’s not to say that it’s a failure if you don’t manage to stop taking medication, it’s about lifestyle choice and we all use substances and different activities to moderate our emotions and thoughts. I just want people to have more choice about how they do that, even with voice hearing or unusual beliefs.
Natasha Mitchell: Your suggestion is that some people can in fact learn to quite comfortably live with the presence of voices.
Rufus May: We’re all saying that.
Natasha Mitchell: How so?
Rufus May: We’ve all just got lots of experience, we know hundreds of people doing that, living with voice hearing, not taking medication and it can be done.
Dirk Corstens: And also research shows that only a minority of voice hearers become our patients and the majority of voice hearers can cope with their voices.
Natasha Mitchell: Dr Sandra Escher, the focus of some of your work and research interest is in fact working with children and their experience of hearing voices. Is that a common experience for children?
Sandra Escher: There’s a taboo on voice hearing, so it’s difficult to say how many, but some research shows about 8% of the children hear voices and only a small percentage needs care. About 85% of the children started to hear voices after some traumatic event or circumstances they couldn’t cope with.
Natasha Mitchell: What sorts of events and traumas might trigger voices in young children — because you’ve interviewed children as young as 8 or 9 who have experienced voices.
Sandra Escher: Yes, about a third of them had problems in school with the capacity to learn. They found the school too difficult, they couldn’t cope with that. There’s a group of 19 children started to hear voices in grieving process when their grandmother died or a friend died and there are some children who started to hear voices in a long physical illness. Divorce — there were 6 children who started to hear voices in the divorce process.
Natasha Mitchell: This is in a sample of 80 children that you studied some years ago.
Sandra Escher: Yes.
Natasha Mitchell: We’re talking about something quite different to say the internal dialogue that some small children have with an imaginary friend, aren’t we?
Sandra Escher: Yes, therefore my research started with children from 8 years on because with 8 years a child must be able to make a distinction between fantasy and reality.
Natasha Mitchell: What were you trying to investigate with them, this group of 80 children that you looked at who were experiencing voices?
Sandra Escher: What we wanted to see if it was a continuous phenomenon because the idea is that once hearing voices you are always hear voices and 60% of the children lost the voices within the three year research period. That’s one of the things. The thing is they have no language for it so they first have to develop a language for their experiences. We saw that if the children learnt to cope with the problems also the voices changed, they learned best to cope with emotions related to problems. And what we saw that was very important that we normalised the experience. That helped parents also to be able to talk with the children about the experiences and learned to find ways to cope with it.
Natasha Mitchell: Because this is very distressing for parents isn’t it.
Sandra Escher: What I mostly do when I get in contact with parents I say hey, calm down because if you are afraid, your anxiety is going to your child, so don’t make it worse.
Natasha Mitchell: Your suggestion is that voices in children don’t always warrant a diagnosis of schizophrenia?
Sandra Escher: Oh no, definitely not, mostly not. Don’t get over-excited, don’t start on medication immediately, go and look at what the problems are.
Rufus May: The trouble with giving a young person a diagnosis of schizophrenia is that they can often then give up on the idea that they can live a full life, and voices can often get more scary once people are given a diagnosis of schizophrenia because the person is fearing the experience more, and voices are responding to that.
Sandra Escher: I totally agree, you take away hope and I think this is one of the things that people need — hope. All the stories of people that we met prove that you can give hope.
Natasha Mitchell: I guess stories are one thing, but people would be demanding good clinical evidence here, wouldn’t they Rufus, and where are the randomised placebo-controlled clinical trials, where’s the evidence that this therapeutic paradigm has good outcomes?
Rufus May: Well there’s a lot of evidence for psychological therapies working with psychosis and we’re starting to develop research into the approaches we’re talking about. But obviously people are really benefiting from them already within self help groups. They are difficult to research because by their very nature they are very independent, they don’t like researchers coming in, a bit like Alcoholics Anonymous groups wouldn’t like researchers coming in and studying them. There’s a kind of lived experience evidence base that’s emerging that’s more about emancipation than about an evidence based from randomised control trials. Because randomised control trials were designed to measure drugs, not to measure people’s holistic recoveries.
Natasha Mitchell: Rufus I have to ask, I mean some people have considered your own approach with clients or patients or people in need as quite unorthodox, quite maverick and even dangerous.
Rufus May: That was a journalist who said that.
Natasha Mitchell: I wonder though, is it suitable for everyone to dialogue with their voices in the way that you’re advocating and developing — or are some people simply not suited to this.
Rufus May: Dialoguing only works with people who hear voices that respond to them. Some voices will refuse to actually acknowledge the person and respond to their thoughts, so they will carry on a commentary but not have an actual dialogue with the person. So you can’t, it’s very difficult to get a dialogue with voices like that so you need other approaches like distraction, or the person building up their self-esteem so they are not bothered by these voices. But I find my approach is very popular amongst people I work with in Bradford. And maverick, the original maverick, he refused to brand his cattle, so he was independent minded so I don’t mind that side of being maverick as long as I’m not considered reckless. I think my approach is very safe because it’s all based on building good relationships with the people I work with.
Natasha Mitchell: People are scared of this approach though aren’t they, family members will say that they experience a lot of fear and a lot of distress with family members electing not to take their medication and experiencing psychotic symptoms that are very distressing to themselves and their family. So there’s a lot of risk in this conversation for people isn’t there?
Sandra Escher: I found that therapists are more afraid than the people themselves.
Rufus May: Yeah, biological psychiatrists are very afraid of this approach and so are drug companies because they want to just treat it in one way. We are saying we need to have a much more holistic approach.
Dirk Corstens: We don’t advise people to stop their medication. We try to find other ways but many patients still take their medication and can cope with their voices.
Sandra Escher: No there are people who are forbidden — if you talk about your voices in hospital and they give you more medication you stop talking about your voices but it doesn’t mean that the voices are away, the voices are still in your head. So what we do is get in the open with it and learn about it.
Rufus May: The scary thing is when you’re isolated with an experience, if you’ve got friends and family who you can talk to about the experience and share ideas about ways to cope with it, half the problem is gone already.
Natasha Mitchell: Well it’s difficult for us to bring out the nuances and complexities of this whole discussion in just a half-hour program. I do appreciate you coming on the show Sandra Escher, Dirk Corstens and Rufus May, thank you for joining me on All in the Mind.
All: Thank you very much.
Natasha Mitchell: And my guests with some radical words for some from their collaborative work Dr Dirk Corstens is a psychotherapist from Maastricht, Professor Rufus May a clinical psychologist from West Yorkshire and Dr Sandra Escher co-founder of the Hearing Voices Movement she’s based at the University of Maastricht. And I’ve popped links and more info up on our website abc.net.au/rn/allinthemind and this being a topic that always divides, I fully expect your comments in my All in the Mind blog too, always welcome or via email on our website which is where you’ll also find the downloadable audio and transcript.
HEARING VOICES NETWORK AOTEAROA NZ 