Voices in the Dark

30 December 2014

Interview with

Various, SHARP clinic

We all have an inner voice. But for some, hearing voices can be much more distinctWellcome and unusual. In this special guest podcast, the Wellcome Trust takes you through what it means to hear voices inside your head, and how our understanding of this phenomenon has changed over the years. 

Hear from Adam, who has a voice with a unique name and identity, Jacqui, who hears hundreds of different voices and Dolly, whose voices led her to believe she was Jesus. 

Adam -  I have a person inside of me. I have a person living within my head.  

Dolly -  To me it's not a broken brain; it's more of a broken story. There's a broken link between yourself and the story you should live.

***

Narrator -  Behind an abandoned shop along Brixton Road in south London, a tall man shelters from the rain underneath the alcove of a two-storey edifice. The building houses the Social, Hope and Recovery Project - the SHARP clinic - run by the South London and Maudsley NHS Trust, dedicated to providing mental health services for people in the Lambeth area. Inside, a pioneering new therapeutic treatment - avatar therapy - aiming to help voice hearers manage their distressing voices, is being trialled.

Avatar voice -  You're worthless; you're a waste of space.

Dr Tom Ward -  Owen, I want you to have a go at talking back to the avatar. Tell him to leave you alone.

Narrator -  Sitting in front of a computer in the basement, Dr Tom Ward is a senior clinical psychologist at the clinic and is role-playing a scenario as part of the therapy. Owen, his assistant, is playing the role of the patient and communicates via a computer in an upstairs room.

Avatar voice -  You're worthless.

Owen -  Leave me alone.

Dr Ward -  That's really good, I want you to say that as strongly and powerfully as you can.

Owen -  Leave me alone. Go away.

Narrator -  This is the story of auditory verbal hallucinations - voice hearing - and of three voice hearers, who reveal their experiences and their search for understanding. My name is Chris Chapman, and this story explores the fascinating phenomenon of voice hearing - what it is and why it happens - and how it is being understood, both through the echoes of the past and in contemporary medical practice. What I've discovered is that voice hearing is not simply about an illness, such as schizophrenia, but is about a journey in discovering how our personal identity is formed and how we make sense of our place in the world. 

***

Narrator -  Adam was 16 when he first heard a voice after he went to collect his exam results from school.

Adam -  My GCSE results were not fantastic, I was very disappointed, and I was walking home, there was an old railway track that you could walk up to to get back to the back of my house. And I opened the paper there, which had my results on, and then all of a sudden I was upset, but there was this...there was somebody there, somebody was... It said I was just a few expletives and said I was a disappointment, I'd let my mum down, I'd let myself down. It told me I was a waste of space, a disgrace, and that I should hit myself... Which I regret to say I did. I did - I punched myself in the mouth.

Narrator -  Dolly also first heard a voice in her teenage years. It was a Sunday afternoon. She was listening to the weekly pop charts on the radio, when a voice suddenly spoke over the broadcast. 

Dolly -  The sentence it uttered for the first time had no meaning then, and if I look back at it, it has no meaning now, but it basically said, "How much do you want?" It started to become quite aggressive in its tone and was saying, "I can see what you're doing, people are watching you." And I thought, "Hold on, this is not the radio." The next day the same voice came up again. And this time it was saying, "You're going to die."

Narrator -  From that second day, Dolly heard voices nonstop for years and years. 

Dolly -  It was like being bullied really. The very few times I did go out, they would say, "Step in front of a bus, jump down the stairwell." It just seemed to me that they wanted my destruction, really. 

Narrator -  The man standing in the rain outside the SHARP clinic is John. He first heard voices much later in life when he was in his 30s.

John -  I couldn't get to sleep. I was in bed, it was late at night, and a voice came in saying, "Kill him, kill him," directed at my stepfather. 

***

Narrator -  What's striking about these people's experiences is that the voices addressed the hearer clearly, in full sentences. They ordered them to hurt either themselves or someone else and they were so real, it was as if they had been uttered by another person, standing just inches away.

Dolly -  It's like as if they were quite close to me. And in fact I tell people I could feel the breath of their mouth on me as well. It felt very invasive and very close, too close. 

Narrator -  Sometimes voice hearing goes hand-in-hand with visual hallucinations - the voices materialising briefly to the hearer - a frightening experience that Dolly recalls when she first started to hear voices.

Dolly -  I was beginning to see, for example, when I looked in the mirror and I brushed my teeth, there was a demonic face behind my shoulder... So it went from shadows before the actual voice hearing to looking like real beings.

Narrator -  Even without visual hallucinations, voices can have such vivid personalities of their own that although they are invisible, voice hearers often have a mental picture of them.

Dolly -  I get more of a physical sense - I mean like if they're tall or thin or if they are a person of colour and even what they're wearing, but some voices you kind of sense that they are wearing a suit and tie and some aren't. It's a bit like when you're on a bus and somebody sits next to you, you can't see them but you kind of guess what they are like just from them being next to you. 

Narrator -  The voice Adam hears is so distinctive in personality that although he knows it's a creation of his mind, he visualises his bizarre companion as a larger-than-life character; one he never actually sees.

Adam -  He is the Captain - a World War II submariner. He looks like me, but he's got a big, big scruffy beard, the old naval, World War II German naval uniform on. Now and again he puts on a daft German accent when I mention he's a German submariner. He isn't, obviously it's me. 

Narrator -  The Captain, for Adam, is a voice - rich in vocabulary - that both distracts and demoralises.

Adam -  It's like having a coach train you, but a coach who's an arsehole who sits there and says, "Well, actually you are fucking useless, you're a fucking waste of space." But if you're sitting having a conversation with someone, he'd be saying something horrible about them or picking out at what clothing they wear then really hone in on it, or their weight, or the way they look, their hair, stuff like that - he would just do anything to try and put you off. You're trying to talk in a conversation with this person and you've got some arsehole behind you saying, "Fucking look at the state of their shoes, look at that..." He's like a family member you love but you don't like, who you've got to put up with.

***

Narrator -  Being spoken to by a disembodied voice that sounds and feels so palpably real is perhaps likely to get any of us questioning the nature of reality as we know it and our place in it. As Dr Angela Woods, a researcher at the Hearing the Voice project at Durham University, explains. 

Dr Angela Woods -  Our ideas about identity, particularly today, are very much bound up in ideals and perceptions of ourselves as autonomous, as rational, as being in control. We think there's a clear division between what's inside, what's mine, what's interior to me, my emotional life, and what's outside, what's not me, what's the other person, and what is the world at large. Voice hearing can I think call all of this into question. That's one of the reasons I think it can be a very, very powerful challenge to people's sense of identity. 

Narrator -  John's voices rapidly developed from the single voice telling him to kill his stepfather, to a multitude that constantly preyed on his anxieties::  how he looked, how he acted or how he felt. Some of the voices were familiar to him - voices of friends or former work colleagues; some were male, some were female. Yet the overriding feature was that they were absolutely relentless - a "non-stop sameness" he says - 24 hours a day, seven days a week. And they shattered John's life.

John -  Going back, I used to not wash myself, my brother used to bathe me and shave me even. I used to stay in bed all the time, didn't want to get out of bed. I didn't leave the house at all. The only time I left the house was for my appointment with my psychiatrist every month. So complete negative symptoms; demotivation.

Narrator -  The enormous pressure of non-stop muttering, abuse and commands can lead hearers to believe what the voices tell them::  that they do come from outside and that they have special powers. For John, this even led him to question his ability to recognise who was in control. 

John -  I was all over the place, I was shouting at my ma, "The police are after me, the police are bugging my computer, my TV." My ma didn't really know what to say. I used to think I didn't have original thought. I used to think it was all voices in my head and I was not part of it. So I had the voices up here and there was nothing from me. But if you think about it, if someone says, "Would you make me a cup of tea, John?" I know how to make it. So I have original thought. 

***

John -  I live in Herne Hill, I walked all the way to Vauxhall Bridge, from my house. And for me not to stop and not... It just shows you how powerful the voices were at the time.

Narrator -  Belief in the power or truth of the voices can be dangerous - sometimes they can convince the hearer to hurt themselves. For John, one morning they did just that. He awoke, and at the behest of his voices, walked over three miles to Vauxhall Bridge - and without stopping, jumped into the River Thames.

John -  They were in the MI5 mode, and part of me thought they controlled me. I didn't feel anything. It's very difficult to explain. But I was walking and I couldn't feel anything and I jumped off the bridge. And the next day my psychiatrist came to see me in hospital and I said, "I went for a swim." I even denied it was even suicide.

Narrator -  Sometimes the message is more ambiguous. Voices can guide the hearer towards their own destruction in seemingly subtle and deceptive ways. This can be veiled as a friend or, as in Dolly's case, by convincing her that she was Jesus. 

Dolly -  They told me to go and recruit disciples. They said, "You can't change the world without disciples," so I went into Morrisons, and there was this guy trying to read which TCP he was going have, was he going to have the smaller bottle or a big bottle, and I said, "You don't need TCP, you need Jesus in your life." He told me to eff off [Laughs]. But actually I did manage to recruit some interest. The voices around the kind of Jesus thing were not harsh, they were quite benevolent. Benevolent but dangerous as well, because they would say, "You're invincible, step in front of a bus to prove it." 

Narrator -  So where do these voices come from and why are they so lucid, despite the malevolent and irrational nature of their commands? At Durham University, Professor Charles Fernyhough believes voice hearing has its roots in our inner speech - our internalised, self-directed dialogue - quite literally, the voice in our heads.

Professor Charles Fernyhough -  If you ask people to reflect on their inner experience, you find that it's full of words. People often say they have a voice going on in their heads the whole time. And the key thing here is not to assume that inner speech is like external speech. So we shouldn't assume that when we talk to ourselves in our heads it's going to sound exactly like what it sounds like when we talk to another person or even talk to ourselves out loud. To give an example::  Imagine you're sitting quietly in your living room late at night and you hear a loud clattering noise outside the window. You are probably not going to say to yourself, "The cat has just knocked the dustbin lid off." You're probably going to say to yourself quietly in your head, "The cat." Or you might say, "The dustbin lid." Inner speech I think often has this condensed note-form quality. It's almost like external speech is the full text and inner speech is the notes you make for yourself on that text. 

Narrator -  These mental Post-it notes are just one of many different forms of inner speech we use. 

***

Narrator -  By studying how children play, we can begin to understand how our inner speech develops. This inner speech stems from the instructions of parents and other adults we, as children, interact with. Using language in this way guides a child's actions and helps to speed-up their thinking. It was a form of cognitive development of great interest to the psychologist Lev Vygotsky. 

Professor Fernyhough -  Vygotsky was a Russian psychologist working in the '20s and '30s. 

Narrator -  Charles Fernyhough again.

Professor Fernyhough -  Vygotsky thought that thinking starts off as a social activity, something that we do with other people. You think about a child working with a parent on solving a puzzle or playing a game, they create a dialogue between them, which is a kind of thinking out loud. Vygotsky thought that in time that dialogue becomes internalised - the child starts to take it on for herself. 

Narrator -  So the inner speech we verbalise at an early age is gradually silenced. But the dialogue continues inside our heads.

Professor Fernyhough -  There are all sorts of important implications that flow from this idea. One is that the inner speech should have a social structure. It should continue to have the structure of a dialogue, of a conversation, a give-and-take, a to-and-fro. Another important idea is that the language, as it's internalised, is changed, it's transformed. It gets cut down and abbreviated and condensed. I think Vygotsky's theory helps us to make sense of the fact that many voices have the quality of a command or an instruction. Usually something quite banal, like "Go to the shops", "Get some milk". Because you are effectively talking to yourself, telling yourself to do things, evaluating your own behaviour.

Narrator -  We can also perhaps begin to see a link between the authoritative, adult voices telling us as children what to do, and the domineering, strident commands issued by invisible beings that voice hearers describe. Brain-scanning technology is also beginning to offer clues as to how inner speech works. 

Professor Fernyhough -  There's also some evidence from neuroscientific studies that suggests that in people who don't hear voices, when they produce inner speech normally, the bit of the brain that listens to language, kind of switches off, dampens its response. It's as if the brain is saying, "We're about to say something, this is us talking, don't listen."

Narrator -  So in actual fact, we're having a dialogue with ourselves all the time. As small children, we say our thoughts out loud. When we grow older, the chatter continues, but silently within our minds as we appraise our own actions and decisions. It helps to reinforce our sense of self - a single, coherent identity that we use to monitor and guide ourselves. But voice hearers don't have that sense of empowerment and control; their voice seems to come from someone else entirely. 

***

Narrator -  If the voices become very distressing to a person's sense of self, the journey for most voice hearers usually includes contact with mental health services. This is followed, in all probability, by a diagnosis of serious mental illness and the prescription of powerful drugs that aim to suppress the voices. Tom Craig is a professor of social psychiatry at the Institute of Psychiatry in London. He explains the use of medication to treat people who hear voices. 

Professor Tom Craig -  Medications available for voices are a group of substances that are known as antipsychotics, because they work for psychosis. And they will improve voices, reduce their frequency and their intensity, I suppose in about a third of cases that are developing voices for the first time. People are more able to see things as being coincidences or not really relating to themselves. Whereas when they're ill, everything seems to be to do with themselves and their delusion.

Narrator -  Antipsychotic medication comes with an array of side-effects for the user, as John has found. 

John -  The side-effects of clozapine are constipation, saliva in the mouth at night-time going all over the pillows, tiredness, putting on some weight - they're the main ones. And also you have the blood count, so I have to go for a blood test every month now. But the clozapine, the positives outweigh the negatives. The voices are less intense as they used to be. So they have helped.

Narrator -  The drugs are no panacea and their long-term results are questionable, as Professor Craig acknowledges.

Professor Craig -  The sad reality is even the most optimistic studies, we're talking about something like a half of the folk who have medicines making a really complete recovery - most of the other half continuing to have some symptoms and so some resistance continuing. Even if the medicine works, it's a temporary fix. It would appear that when you stop the medicines there's very high rates of relapse. So even after a first episode of psychosis, we're encouraging people to take their medicines for one to two years.

Narrator -  A long time to be taking drugs with some extremely potent side-effects. And because the effectiveness is so variable, voice hearers tend to have quite opposed views on whether or not they work. Dolly and Adam have had very different experiences. 

Adam -  I am on two different types of medication. I am on venlafaxine, which is an antidepressant. I am on Aripiprazole, which is an antipsychotic. Medication helped me drastically. I tried for so long without medication, then I finally said, "Actually, I cannot do it by myself. If there's some medication out there that can help me, then please I want to give it a try, I want to give it a shot."

Dolly -  The first time I was prescribed medication I was about 21, I think. It was a horrible sensation of being so tired you could barely stand but also needing to move because of the medication. I could still hear the voices, I was still depressed and I was still paranoid, and they kept saying to me, "It'll get better, it'll get better," and it never did get better to be quite honest. You know, none of the medications I've ever taken has taken my voices away, not a single one of them. 

Narrator -  Jacqui Dillon is a voice hearer and the Chair of the national Hearing Voices Network in England. Along with many other voice hearers, she rejects the idea that voices are symptoms of an illness that require medication.

Jacqui Dillon -  People who hear voices are diagnosed with paranoid schizophrenia, which is probably one of the most serious psychiatric illnesses. I don't believe in schizophrenia, I mean I think that's just a kind of social construct. You know, many people hear voices that are intimidating and frightening. Are they ill? I don't think people are ill. I think people have maddening experiences that literally drive them crazy. But to kind of locate the problem in their head and to not see it within a context, for me seems a bit crazy actually. 

***

Narrator -  Jacqui believes that, ¬rather than voices being a symptom of a brain disorder, maybe we can gain a greater understanding if we investigate the story of someone's life. Back in the Middle Ages, visions were often seen as powerful messages about oneself. Hallucinations involving demonic forms could be seen as symbols of one's bodily passions or desires ¬- something to be subdued. As Dr Hilary Powell, a medieval historian at Durham University, has discovered, the challenge during this period was not to suppress them, but to try and understand them. A famous story of such a hallucination was documented in the 10th century about Dunstan, who later became Archbishop of Canterbury. Doubtful about whether he had the vocation to lead a monk's celibate life, he worked as a highly skilled silversmith and scribe. A serious illness changed his mind and he took holy orders in 943 AD. He built a tiny cell for himself - one-and-a-half metres long and less than a metre wide - in the town of Glastonbury. There he devoted himself to prayer, while continuing to work as a smith.

Dr Hilary Powell -  One day when he is engaged in his work as a smith a demon appears to him in the window of his cell and asks him to stop what he is doing in order to do something else. Dunstan does this and then this figure changes shape, so he is at first an old man, then he becomes a boy and then finally he becomes a seductive young girl. At this point Dunstan recognises what's going on - he sort of sits there patiently allowing this demon to shape-change - and then he gets the tongs that he had been using for his work and he basically squeezes this demon's nose with these tongs and the demon runs away. So there is this idea of chastity coming through in his decision to become a monk, the decision to be celibate, and it's only after the demon has assumed this role of a seductive young girl that we have the comment that Dunstan now recognised what this thing was.

Narrator -  This story proved useful for monks who were having similar hallucinatory problems. 

Dr Powell -  For anyone who is hearing this story, it's a great thing to instruct them on what they could do. You have got a thought that is intrusive, that you shouldn't be having, you need to somehow change that and you can change that in all sorts of different ways to sort of inoculate the power that it has over you.

Narrator -  Dunstan's story has allusions with English folklore and the malevolent shape-shifting creatures known as 'boggarts'.

Dr Powell -  A boggart is a supernatural creature that can take any form that you fear.

Narrator -  These mythological creatures were recently brought to life in the film of J K Rowling's Harry Potter and the Prisoner of Azkaban. Like Dunstan, Harry Potter and his Hogwarts classmates repel the visualisation of their worst fears using ridicule and the power of laughter. 

Dr Powell -  There is a lovely scene where they are first introduced in this classroom and the boggart changes shape depending on who is approaching it, is dealing with it, so it has all sorts of different forms, which for everybody else is quite comical and amusing, but obviously for the child who is confronting it is a source of great terror and fear. The way in which you do it is to change the image of that, to make it humorous to you, and then it loses its fearful form.

***

Narrator -  Dunstan didn't try and squash his demon or deny its existence; instead he studied it. And once he had discovered its nature, he was able to control it, ridicule it and chase it away. A thousand years later, this is the approach more and more voice hearers are beginning to adopt. 

Jacqui Dillon -  I have lots of voices, over 100. 

Narrator -  Jacqui Dillon.

Jacqui Dillon -  I hear the voices of children, of teenagers, of adults, of men, of women; lots of voices of people that I've known in my life. When I had a serious breakdown, at that point the voices were very disturbing and disturbed and distressed, and I had really quite an adversarial relationship with them. You know, they kind of intimidated me and I sort of told them to shut up, and that was kind of how we went on really. And the kind of work that I've done is really trying to understand more about well who are these voices and where do they come from? 

Narrator -  The organisation Jacqui now works with is part of the international Hearing Voices Movement, with networks in 23 countries. The movement began in 1987 when Dutch psychiatrist Marius Romme and voice hearer Patsy Hage went on Dutch national television and spoke about voice hearing. Their appearance prompted 450 voice hearers to contact the show. In subsequent research, Romme and his colleagues found that around a third of the voice hearers had been able to live their lives without medical intervention. They had done so by talking back to the voices whenever they were abusive and also welcomed voices that were positive and supportive. Professor Romme's interest was about wanting to understand what the voices were like for these people in order to help them - something that went against established clinical practice.

Professor Marius Romme -  From a very long time ago, hearing voices was seen as a symptom of an illness. And as long as you do and see that as a symptom of an illness, you don't learn much about the experience. 

Narrator -  Romme has dedicated much of his career doing just that::  talking to voice hearers and understanding more about their experiences. The research that he and Sandra Escher developed at the University of Maastricht examined the features of the voices each hearer described. 

Professor Romme -  We slowly developed a concept::  how to analyse the relationship between the characteristics of the voices - like content, identity, history - and what has happened in the person's life and how emotionally that has influenced the person. It became clear that 90 per cent of the persons have emotional problems.

Narrator -  Through interviewing a large number of voice hearers, Romme and Escher devised a blueprint for how best to analyse past experiences in people who heard voices.

Professor Romme -  We start with simple questions like::  What do you experience? How do you hear the voice - by your ear, in your head? How many voices do you hear? Do they have an identity? Do they have a name? What kind of character traits do they have? Are they ugly? Are they nice? Are they helping you? Are they criticising you? That kind of... So you start talking about the voices, so the people who hear voices start trusting you that you ask things they experience. So it is building up from the general issues of how many voices, going into slowly the history::  When did you first hear a voice? And what has happened at that time?

***

Narrator -  For many people like Jacqui Dillon in the Hearing Voices Network, Romme and his colleagues' discovery that voices often start after a traumatic event rings true. Certainly that seems to have been the case for Adam, his voice fell silent immediately after the episode when receiving his exam results. But it returned much more powerfully years later, when his military career began to derail.

Adam -  I desperately wanted to be in the army, as a soldier, I always wanted to be a soldier. I always loved the thought of the artillery with the big guns and looking back at the old films with the cannons and all this kind of stuff.  

Narrator -  Adam achieved his dream, but once he'd joined the army he began to suffer an identity crisis.

Adam -  I was very soft-natured as an adolescent growing up and I was severely bullied out of school, in school. And then I came across this army where you had to be aggressive, and you know, and show your manliness and be a man, that type of thing. And my mind was, "Who the hell am I?"

Narrator -  Adam began to suffer bouts of depression, anxiety and emotional rage.

Adam -  I was set to go on an anger management course. And I volunteered to go to Iraq in 2003. I was deployed out there for a six-month tour, which at the start of the tour I was still having troubles. I was opinionated, I wasn't taking orders too well, I was very argumentative. And there was still that major battle of who am I? Am I this nice quiet person or am I this aggressive man? And then when I came back, still in the army, the wheels really started to come off. I started to drink heavily. Uncontrollable inner rage. I put weight on. I became lethargic, didn't want to do anything, uninterested. And then it was to the latter end of this is when the voices started to creep in. 

Narrator -  A voice arising out of an identity crisis, as it did for Adam, makes some sense. But many voice hearers say that in fact their voices came to protect them. It's hard to accept that voices that are rude, abusive and urge someone to harm themselves or someone else can possibly be protective. But hearers say their voices have provided a shield, separating themselves from harrowing experiences in the past - experiences they were too young or vulnerable to handle, with the voices taking all the hurt. So no wonder they sound so angry - like the voices telling Dolly to kill herself.

Dolly -  Just before I heard my voices for the first time, my dad tried to strangle me to the point I became unconscious. He told me he wanted to kill me. My voices saved my life. I could have just said, "It's not worth living, my dad tried to kill me, nobody cares, better to die." And, you know, I could have committed suicide. What my voices did was protect me by... I couldn't look at the truth directly at the time, so voices helped me not to do that. 

Narrator -  Jacqui and Adam's voices also provided a degree of solace. 

Jacqui Dillon -  One of the voices that came to me as a small child was this voice that I call the Great Mother. And she was this very powerful maternal figure that was very loving and comforting. And she came into my life because actually my own mother was terrifying. She comforted me, she helped me to feel less alone. I think her presence in my life enabled me to survive with my humanity intact, survive some really devastating experiences as a child. And she's also enabled me to be a really loving mum to my own children.

Adam -  I think my brain installed it to give me somebody to talk to, really, like a child who has invisible friends, that kind of thing, you know.

***

Narrator -  For some hearers, the voices only arrive years after the event that generated them in the first place. The original trauma is buried deep in the mind while the voices wait until the hearer is ready to confront it. Then they begin to mutter, whisper and shout about the past. They often speak in code, using cryptic metaphors that allow the hearer to slowly remember what happened, bit by bit.

Jacqui Dillon -  It's a bit like getting a telephone call from your unconscious. And it does feel like in a way the same could be true of voices::  that they are these communications from the unconscious that are significant and meaningful, and that they're happening for a reason. 

Narrator -  Jacqui spent time in a psychiatric hospital, where she was given antipsychotic drugs to suppress her voices, and was even told her memories of her abusive childhood were false.

Jacqui Dillon -  Very real experiences were deemed to be sort of delusions. And even in that kind of highly distressed state I knew there's something meaningful happening for me here. And sort of wanting to just obliterate that with medication for me didn't actually make any sense.  

Narrator -  To link voices to buried childhood traumas might seem an extreme Freudian view, but it's one that's increasingly seen as being a possible cause. Dr Angela Woods.

Dr Woods -  There is evidence, quite strong evidence, for a link between childhood trauma or childhood adversity and voice hearing. It's important to state that it's by no means the case that anyone who experienced childhood trauma will hear voices or that all voice hearers in some ways experienced childhood trauma, that's a much more kind of complex situation than that.

Narrator -  An analysis of several research papers recently highlighted that patients who had been diagnosed with psychosis were, in fact, three times more likely to have been exposed to childhood adversity than controls - a significant factor that was noted by Dr Woods and her colleagues. 

Dr Woods -  This finding is stronger than the association between smoking and lung cancer when it was first brought to scientific attention in the 1950s. This is an incredibly powerful statistic.

Narrator -  Voice hearers who've had traumatic prior experiences - whether through abuse, neglect or bullying - are often left with feelings of guilt, shame and hold a very poor image of themselves. Professor Julian Leff is a psychiatrist who's worked at the Maudsley Hospital for over 30 years.

Professor Julian Leff -  They have this terrible feeling that this person inside their head is constantly criticising them - what one of the psychoanalysts called 'the internal saboteur'. I think that in order to release themselves from that internal saboteur they have to externalise it. The penalty for that is, that while the voice is within their head, maybe they can feel they can have a little bit of control, but once it's externalised it is absolutely autonomous and there's nothing they can do, and that's exactly what they say, "I'm helpless, I can't do anything about it, I can't control it," because it's no longer within their mind.

***

Narrator -  Although reconfiguring a sense of identity through an understanding of the past can prove beneficial for some, others can find their voices too overbearing to manage and are simply unable to talk back. Voice hearers who experience such distress are hoped to be the beneficiaries of avatar therapy - the brainchild of Professor Julian Leff.

Professor Leff -  Most patients if asked, "What do you feel about these voices?" would say, "The helplessness is the worst aspect, the fact that I can't do anything to stop them or change them."

Narrator -  Like Marius Romme, Professor Leff found that some of the voice hearers he worked with were able to control aspects of their voices if they were able to sustain a dialogue with them. Leff began to think about how he could help patients achieve this dialogue. He decided to adapt an existing technique known as voice dialoguing. Professor Tom Craig explains how it works.

Professor Craig -  There's a therapist, a patient and an empty chair, and you ask the patient to project into the empty chair the entity that is their voice. And then have the patient, or sometimes the therapist, voicing the things that the entity says. And then having a discussion or a dialogue, encouraging again the same dialogue if you like with the therapist and patient role-playing the voice in the empty chair.

Narrator -  The approach has proved useful, but Leff felt it was limited by the fact the voice hearer couldn't actually see who he or she was talking to. 

Professor Leff -  We rely very heavily, in conversations with ordinary people, on nonverbal cues. For example, nodding the head, smiling, maintaining eye contact. These are all absent when you're hearing an invisible voice. So it's very hard to keep a dialogue going.

Narrator -  What if Leff could meet the voice hearer halfway and help them externalise the entity in their head? The idea of a simulacrum or avatar image for the voice was born. Colleagues at University College London adapted computer software similar to photofit techniques used by the police. Clients could choose a face, which could then be morphed and amended until it resembled their mental image of the voice. Leff ran a small pilot study, which had surprising results.

Professor Leff -  What I thought could be achieved is that if I enabled the patient somehow or other to gain control over that image of the voice, then maybe the frequency and the volume of the voices would go down. It never occurred to me for a moment that the voices would actually completely disappear.

Narrator -  Leff has since begun work on a larger clinical trial, working alongside Professor Tom Craig, with the results due to be published in 2016. All of the volunteers on the trial have a diagnosis of schizophrenia in addition to hearing persistent and acutely distressing voices. Professor Craig explains how the avatar is created. 

Professor Craig -  We ask them to construct an image in the computer of the entity that they see speaking to them, and then with that image to create a simulacrum of the voice that they hear. It starts with the therapist's voice, which is then distorted or morphed, can be made deeper, squeakier, harsher, coarser. And then the two entities are put together, the voice and the face.

Narrator -  It's rather like using Skype, but the therapist - sat in another room - is disguised as an avatar on the voice hearer's screen. The therapist communicates via a headset microphone - switching between his own voice and the morphed voice of the avatar. The effect is both convincing and disturbing.

Avatar voice -  Tell me one thing that's good about you.

Owen -  There's a lot of good things about me.

Avatar voice -  Name one.

Narrator -  It's an unusual role for a therapist to take. Professor Leff.

Professor Leff -  It can feel rather awkward to have to say the nasty things to the patient that the voice says, but the patient is forewarned. You tell them, "Well, I'm going to support you as the therapist. I won't let the avatar harm you in any way. And if you can't stand hearing these things, you just let us know and you can press the stress button." So there's a way out of that.

Narrator -  Perhaps unsurprisingly, some of the voice hearers involved in early tests of the system found it extremely distressing.

Professor Leff -  One patient, she had created an avatar of a man she thought was the head of the London underworld, who she'd been involved with as a girlfriend years back. And she thought he was setting people on her. And she heard him saying, "You'd better leave the country, that's your last chance." When he appeared on the screen and I voiced him and said hello to her in the voice he had, she burst into tears. So quickly we shut down the screen, and I moved into the room and said, "What's the matter?" And she pointed to the wall and she said, "He's behind the wall." Again she was reassured when I told her, "He's not there because you've created this image. He doesn't exist here in this room." And she was able to go on and she actually did very well. 

Narrator -  Gradually, over the course of six sessions, a dialogue is formed as the voice hearer begins to respond to the voice. The focus of the therapy is on enabling an increasing sense of control for the voice hearer. The therapist prompts suggestions for taking control and encouragement when they react spontaneously.

Avatar voice -  Why should I leave you alone? What's changed?

Owen -  I'm just not taking it any more. I don't care what you're saying. I'm in charge now. I don't have to listen to you and I'm not going to.

Avatar voice -  Maybe I've misjudged you; maybe you're a bit stronger than I thought. But I'm not giving up that easily, but you've given me something to think about.

Narrator -  Leff describes the therapist's dual role as being somewhat akin to a friend-and-foe interrogation tactic, but in which one side always prevails.

Professor Leff -  There's a constant switching for the therapist between bad cop and good cop. It's of course the good cop that prevails in the end and defeats the avatar, who's also the therapist but is the bad cop. And that does seem to work extremely well. The other point about the therapist is that he or she needs to encourage the patient to become very active against the avatar knowing that it can't hurt them.

Narrator -  The voice hearer is also able to take home an audio recording of each session so they can reinforce their understanding of how to challenge their voice on their own.

Professor Leff -  There is the use of the MP3, which enables them to maintain contact with the success they've had in the course of the sessions. And I say to them, when they've stopped/finished the therapy, I say, "You now have a therapist in your pocket, use it whenever you feel you need it." 

Narrator -  One voice hearer was a property investor, who for 16 years had heard an abusive and persistent voice of a devil-like entity giving him bad financial advice, which unfortunately he followed. His reaction to the representation of his voice on-screen was dramatic. 

Professor Leff -  When he saw the devil, which he created as a red devil as an avatar, he was furious, absolutely furious with the devil, and told him to go away, and leave him alone and not have anything more to do with him. That was the first session. Then he came back for the second session and he was even more vigorous. And because he completely believed in the reality of this devil I took him at his word and I said to him, "Tell the devil that he has nothing to do with you, you're a good person, tell him to go back to hell and torment someone he needs to torment." And then he came back for the third session, and I said, "Are you ready for your session?" And he said, "No." I said, "Why not?" He said, "Well, when I was walking up the hill from the hospital after the last session the devil came back to me. And I said to him, 'You are not ever, ever going to talk to me again.' And I haven't heard him since." This gentleman has completely recovered and is now working as a financial consultant abroad. 

Narrator -  The therapy is limited to those who hear only one dominant voice though, and not all participants have had such positive results.

Professor Leff -  They all seemed to manage the avatar, with one exception, and this was a woman who the voice was calling her a horrible name all day long - nothing else, just that horrible name. And when she heard the avatar using that same name she just got up and she said, "I've had enough of this, I hear this every day I can't bear to hear it here." And she left.

Narrator -  Through cognitive behavioural therapy sessions at the SHARP clinic, John slowly began to regain his confidence and manage his voices. It was at this point that he volunteered to try avatar therapy.

John -  With voices what I usually do is ignore them - they do my head in sometimes. But when I started to do it, I found it relaxing because obviously I had Dr Tom also on a sort of speaker, so he would encourage me to answer back to the voices and to challenge them. And so I do challenge them. So when the voices say they made me jump off a bridge - which they still say - I say I very much doubt that, that they'd have the control over me to do that. And so the avatar therapy, for the fourth and fifth sessions, it sort of became more positive in a way.

***

Narrator -  So many voice hearers today tell us that their journey began in adversity and that their story has been one of trying to understand, confront and bring order to chaos. Voice hearing is certainly a nuanced phenomenon and one that is more common than we might think. Professor Charles Fernyhough. 

Professor Fernyhough -  In terms of the number of people who have fleeting voice-hearing experiences, who will hear a voice once or twice in their life - I mean the best estimates we've got are something like 5 to 15 per cent of ordinary people will have some kind of voice-hearing experience in their lives. So, let's think about the experience. Let's try to understand it in all of its complexity and richness. Let's treat it with some respect. Let's look at the ways in which people make sense of this unusual, puzzling, mysterious and often troubling experience.

Narrator -  The stories we've heard have included a variety of experiences and we can perhaps better understand these experiences by doing what we've started to do now - to listen. 

Jacqui Dillon -  Most of the time they make me laugh, they're actually hilarious and we have a good old laugh together. They're insightful, they're loving, they're comforting and they help me to feel less alone. They know me better than anybody else and they're always there for me.

Adam -  There is a feeling of safety to a degree, you know, keeping a look out. Sometimes he'll come across and he'll stand with a big giant pair of acme-type binoculars. It feels like you've got a mate looking out for you as well, making sure you're okay.  

John -  The voices haven't helped me at all, really. And I wouldn't miss them if they went away.

Dolly -  The more control a person has in writing their life story and realising that you can choose the direction of your story, you can choose your ending, you can choose the plot, the theme, you can even choose the scenery in your life, the less the broken story has power really. To me the less power the broken story has, the less power my voices have.  

Jacqui Dillon -  I've been on a long old journey with my voices and in my experience there's always a story; everyone's got a story. 

Add a comment