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24 March 2021

The voice in your head

How a movement of people who hear voices is reshaping our understanding of mental illness – and consciousness itself.  

By Sophie McBain

Patsy Hage began hearing voices when she was eight years old. She was playing with her brother in the attic when her scarf caught alight on a candle. She would always remember running downstairs to her mother, her clothing on fire, convinced she was going to die. She was rushed to hospital and treated for serious burns. It was in hospital that the voices first started talking to her. She heard them for the rest of her life.

Hage was born in 1955 in Tilburg, a city in the south of the Netherlands. She initially thought of the voices as her protectors. If she got into a fight or there were arguments at home, they would tell her jokes to distract her. She heard around 20 voices and liked to talk to them while she cycled to school.

But as she got older, the voices became her tormentors. They would ban her from doing anything she enjoyed. They sabotaged her friendships and her romantic relationships. If she tried to ignore them, they would punish her by forcing her to do things she didn’t want to do, like cut herself. At 16 she ran away from home, but the voices followed her into foster care. Later, she dropped out of university, struggled to hold down jobs, became suicidal, was diagnosed with schizophrenia and spent her early adulthood in and out of hospital.

In 1987, Hage, then 31, was interviewed by the TV presenter Sonja Barend on her Monday night talk show, Sonja op Maandag. Hage told Barend she was desperate: “What I’m afraid of is that this ends with a life where I’m just stuck sitting in a chair at home, not allowed to meet anyone or do anything, and that I end up climbing the walls with loneliness and isolation.”

[See also: How to forge a family]

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The other guest on the show was Hage’s psychiatrist, Marius Romme, a tall, white-haired, square-jawed professor of social psychiatry at the University of Maastricht. The two of them had asked to come on Barend’s show because they were casting around for more help. “Helping her so that the voices go away is not something psychiatry can do,” Romme told Barend.

Medication did not silence Hage’s voices, unless she took such a high dose that she felt unbearably numb and detached from her life. Hearing voices that others can’t was then, and it often still is, seen by psychiatrists as a classic symptom of serious mental illness. And yet over the three years that he had been seeing Hage, Romme had started to feel that almost everything he’d learned in medical school about voice-hearing – or what many psychiatrists would term auditory hallucinations – was wrong. 

***

Romme was never a conventional psychiatrist. The son of a prominent postwar politician, he had an activist streak and in the early 1980s was involved in campaigns against the building of psychiatric hospitals, believing people are better cared for within their communities. Romme’s psychiatric training had taught him that indulging patients’ delusions risks reinforcing them, but Hage insisted that the voices she heard were not symptoms of a medical condition. Her problem wasn’t that she heard voices, it was that they were sabotaging her life. Unless Romme could accept the voices were real, Hage didn’t see how he could help her.

Together they read and discussed The Origins of Consciousness in the Breakdown of the Bicameral Mind, a 1976 book by the Yale psychologist Julian Jaynes that argues that in ancient times humans lacked consciousness as we know it today and instead experienced thought as a series of auditory hallucinations, commands that they ascribed to their leaders or gods. These voices, Jaynes speculated, may have been similar to those heard by people with schizophrenia. Hage found it “reassuring”, Romme later wrote, to consider that three or four thousand years ago her experiences might have been normal.

It struck Romme that the dominant psychiatric model for understanding voices, as an upsetting symptom of a misfiring brain, as meaningless as radio static, was only one of many accepted explanations for the phenomenon. In some cultures and communities, voice-hearing is considered a gift: a way of seeing into the future, reading minds, or communing with the departed or the divine. Romme began to wonder, too, whether other voice-hearers might help Hage answer the questions he couldn’t: what are these voices and what do they mean? How might she learn to live with them?

After the Sonja Barend show aired, around 450 people who claimed to hear voices contacted a special hotline, of which around 150 said that their voices did not bother them. This was a turning point for Romme, as the psychiatrist, now 87, told me recently when we spoke via Zoom. “When you are active in psychiatry you don’t see the people without complaints, and you don’t seem to think about them,” he said. Later that year, Romme held a first congress for people who hear voices. Hage was one of the speakers, and 360 people showed up, including psychiatric patients, psychics, spiritual healers and religious devotees who frequently heard the voice of God.

One thing many of them had in common, Romme discovered, was that they had started hearing voices after suffering trauma, such as bereavement, abuse or life-threatening illness. With time, Romme became convinced that far from being a symptom of debilitating illness, hearing voices could be a creative and useful response to trauma. Even the most hostile, intrusive voices might be rich in meaning, and if people could learn to understand what their voices were telling them they might regain control. The voices might present problems, but they could also offer solutions.

For Romme and his wife, the journalist Sandra Escher, the conference marked the beginning of decades of research into the relationships between the voices a person hears and their life history. The meeting was transformative for many attendees, too. For years they had felt isolated and misunderstood, and now, inspired by a newfound sense of community, they set up the Resonance Foundation, a peer-support group that began campaigning for broader social acceptance of voice-hearing and other related phenomena such as seeing visions. Over the past four decades this model has spread to more than 30 countries, forming an international coalition known as the Hearing Voices Movement. This movement is reshaping our understanding of hallucination and redefining what it means to be labelled mad. 

***

Public perceptions of voice-hearing are often shaped by fear. People who begin hearing voices as children often describe how quickly they learn not to mention their voices to others because of the horror it provokes. Voice-hearing taps into some of our deepest cultural anxieties, the writer and psychologist Charles Fernyhough observes. “We’re so rooted in the idea that there is some unitary self, that we are alone in our bodies, and any kind of intrusion on that is deeply existentially troubling,” he told me.

Our cultural unease contributes to the myth that it is unusual to hear voices. It is not. Fernyhough estimates that between 5 and 15 per cent of people have occasional or one-off voice-hearing experiences, with around 1 per cent having more complex or extended experiences. Of this 1 per cent, only some will seek or require medical care. The Dutch psychiatrist Dirk Corstens, who was a protégé of Romme, likes to describe voice-hearing as a “common human variation, like homosexuality”. His analogy is politically charged. Until 1973, the Diagnostic and Statistical Manual of Mental Disorders – the so-called psychiatrist’s bible – classified homosexuality as a mental disorder. Psychiatric diagnoses can reinforce the limits of socially acceptable behaviour and desires, as mental illnesses are in part social constructions: that homosexuality ceased to be a mental disorder was thanks to successful political campaigning, not due to any scientific breakthrough.

[See also: Covid-19 and the anxiety epidemic]

While working as a researcher for Romme, Corstens interviewed dozens of spiritual healers, psychics and mediums who had attended the first voice-hearing conferences, and they broadened his perspective. “If your experience is framed as mad, it’s very different from if your experience is framed as a gift, that you can use in your work, or use to help people,” he told me. “Paranormal people also have to learn to cope with their feelings and premonitions and voices, like other voice-hearers. But because they have some understanding of their voices, it makes a lot of difference.”

In common with many people associated with the Hearing Voices Movement, Corstens has retained a personal and professional agnosticism about how to explain voice-hearing: to him explanatory theories are less important than helping people to cope and feel in control of their lives. Sometimes his patients have premonitions. One once told Corstens that his wife was pregnant: “I thought, ‘That’s absurd.’ Then four weeks later, we found out my wife’s pregnant!” 

***

In 1988, a year after Romme’s first voice-hearing conference in the Netherlands, Paul Baker, a mental health worker and community organiser from Manchester, met the Dutch psychiatrist at a conference in Trieste. For Baker, who still works with a number of mental health community groups in Manchester, speaking to Romme was revelatory. Baker knew Romme’s ideas would resonate with the campaign groups he was involved with, as well as with his own brother, who had been diagnosed with schizophrenia and sectioned. Baker arranged for Romme and Escher to come to the UK on a speaking tour in 1989, and the following year helped establish the Hearing Voices Network in Manchester to serve as a hub for the peer-support groups spreading across the country.

For Baker the project was deeply political. “You’re hearing my radical voice now,” he warned, before delivering a rapid-fire assessment of what he described as society’s rampant “psychophobia”, or discrimination against people with mental illness. He saw the Hearing Voices Movement as a human rights campaign, one that was challenging the power of psychiatrists to treat people against their will. He wanted to interrogate the process by which an individual’s suffering comes to be seen as a disease rather than a response to their circumstances. “We know that most people who hear voices have been sexually abused or traumatised in childhood. Yet that gets colonised by psychiatry into a disease process and an illness,” he said. “The important question in psychiatry is not, ‘What’s wrong with you?’ but, ‘What happened to you?’”

The Hearing Voices Movement caught on in part because it reflected some of the major debates taking place within the mental health profession: such as whether mental health drugs are overprescribed, and the validity of mental health diagnoses. From the 1960s, critical psychiatrists began protesting the oppressive and sometimes brutal nature of much mental health care and criticising the prevailing belief that mental illnesses are a medical condition.

The heterodox psychiatrist RD Laing described insanity as a rational reaction to an insane world, and saw the delusions associated with schizophrenia as a survival response, a way to fend off emotional catastrophe. (Baker’s brother, now a Tai Chi instructor, credits a therapeutic community modelled on Laing’s philosophy with turning his life around.) The psychiatrist Thomas Szasz argued that mental illness is a “myth” used to disguise, and contain, moral conflict.

Many people who report to a psychiatrist that they hear voices will be diagnosed with schizophrenia, a condition Szasz described as the “sacred symbol” of psychiatry, a “grab-bag of misbehaviours” and an illness invented by psychiatrists to justify the forced hospitalisation and harsh treatment of people with unusual and often disturbing behaviours or beliefs. Schizophrenia was once seen as a discrete, degenerative illness with a biological basis. And yet scientists have struggled to find a biological explanation and instead are recognising that social factors play a considerable role: abuse, deprivation and isolation all contribute to higher rates of the condition. By 2016, the pre-eminent British expert on schizophrenia, Robin Murray, even predicted that “the term schizophrenia will be consigned to history, like ‘dropsy’”.

Several members of hearing voices groups told me that being diagnosed with schizophrenia had robbed them of hope: they were told they were chronically sick and likely to get worse. When they attended a hearing voices group, they felt newly empowered. The hearing voices approach insists that everyone should be allowed to reach their own understanding of their experiences, and that no one has the right to impose their ideas on others. While some do view their predicament medically, and find medication and diagnostic labels useful, others do not. Some voice-hearers told me that simply feeling unconditionally accepted could be healing. “It’s the one place you can talk about voices, or visions, or tactile experiences that other people don’t share where no one is going to say you’re weird, where no one’s going to judge you, and where you have a right to your own beliefs. It’s a very emancipatory space in that way,” Rai Waddingham, the chair of the English Hearing Voices Network, told me. 

***

When Waddingham arrived at her first hearing voices group, around two decades ago, she was struck by how well-kempt everyone was. After suffering a breakdown at university, she had spent most of the previous year and a half in hospital, and because she was convinced that she was under permanent surveillance by hidden cameras, she was nervous about getting undressed to shower. She had initially been reluctant to attend the group: taking her cue from mental health professionals, she had thought it best to try to ignore her distressing voices and suppress them with medication.

But she was also desperate. She believed an alien was threatening to take over her body and force her to kill people. Hurting someone was – and is – one of her deepest fears. She had tried to kill herself before; she wasn’t sure she could survive this crisis. And so she arrived at what looked like a room full of psychologists, not a support group for people with schizophrenia. “It was really shocking to me when people started talking to realise that actually some of these people did have experiences that were every bit as intense as mine,” she recalled.

Her first hearing voices meetings acted like a “travel brochure”, Waddingham said: they gave her a glimpse of an alternative future. Maybe she wouldn’t spend the rest of her life in and out of hospital, on mind-numbing drugs. Another member said that when she thought people were spying on her through the walls, putting up posters had helped. Waddingham tried that, creating a “crazy little safe corner” she could shelter in. Even such small steps could create a virtuous cycle. They allowed her to start doing more, and once she was busier her worries became less intense. She found meaning. She found friends. She rebuilt her life. The network helped her find supported housing, she began volunteering, and in 2007 she found a job as the project manager for the London Hearing Voices Network, where she pioneered services for children who hear voices and set up hearing voices groups in prisons.

Waddingham, now 43, with pink hair, square-framed glasses and a warm, self-effacing demeanour, also works as a mental health trainer for the NHS and is completing a PhD in survivor organising. Yet she hasn’t recovered in the strict clinical sense. She hears around a dozen voices. Some are “hideous” and say horrible, terrifying things, but they don’t scare her now that she understands that is simply their way of communicating.

The voices are hard to describe: “It’s like, imagine you are sitting there with your family, or your close friends, and someone asks you, ‘So what’s your relationship to all these people?’” They hate it when she dismisses them as the product of trauma or a figment of her imagination. “I guess they’re just there. They’re part of my relational world. They’re just a part no one sees,” she said. For her, trying to explain what exactly these voices are is a “distraction”. Maybe her brain simply works differently from other people’s. Maybe, as a Native American man once told her, her ancestors are communicating to her through her blood. “Maybe it’s just biochemical and I’m just putting meaning into it. Does it matter?” she said. 

***

Talking to Waddingham I found myself sharing a memory I hadn’t thought about in years. I told her that when I was 25 and my grandmother was dying I privately began to wonder if we were psychically connected. Some days I felt OK, and in the evening my mother would call to say my grandma seemed to be recovering. On other days I felt awful, panicky and jittery, and when my mother called from hospital I knew before she spoke that something had gone wrong: my grandma had contracted a secondary infection, she needed supplementary oxygen, she needed a ventilator. Two nights after she died, while I lay in bed alone and inconsolable, I felt my grandma lie down next to me and for a few moments I felt completely calm.

I told few people about this at the time; my belief in the visitation embarrassed me. In the years since, that memory has become less important and I’ve come to conclude that when my grief was rawest, I simply could not accept the idea that death is absolute and final. I needed to feel that our closeness had manifested itself as some kind of quantum entanglement, so that her spirit was speaking to mine. Perhaps I needed to feel my loss was something extraordinary.

“It’s interesting that you don’t necessarily finalise what it means, right? There’s an open question mark over so many of our experiences. Does it matter if it was related to ghosts, or something spiritual, or the memory? It was an experience, and it has meaning,” Waddingham said, with such conviction and warmth that for an embarrassing moment I thought I might cry. I remarked that the meaning of this memory has changed over time for me. “That’s interesting too. It’s similar to me in that I don’t think about being a voice hearer most of the time these days. It’s just how I go through the world, it’s not that important,” she said. Her husband sometimes forgets that she hears voices. Once when they were on holiday near the Grand Canyon, he remarked in the stillness of the desert how quiet it was. “You’ve forgotten who you’re with, sweetie,” she replied with a laugh. “I don’t get silence very often.” 

***

It’s common for people who are bereaved to experience unusual sensory experiences, like seeing or hearing the deceased, or feeling their presence. According to a paper published in the academic journal Schizophrenia Bulletin in 2020, recent studies estimate that between 47 and 82 per cent of people have experienced some form of sensory or quasi-sensory experience of the deceased. There are other contexts in which hallucination is common. During near-death experiences, survivors often describe feeling a benevolent, guiding presence by their side. The last man to leave the South Tower before it collapsed on 9/11, a Canadian office manager named Ron DiFrancesco, described feeling someone hold his hand and lead him outside – an occurrence known as a “Third Man” experience.

There has been only limited research into possible connections between these experiences and the voice-hearing associated with schizophrenia, but such examples lend weight to the notion that spontaneous hallucination is not unique to mental illness but is a much broader phenomenon. It suggests that people may exist on a spectrum, with some more susceptible to voice-hearing than others. Charles Fernyhough wonders if the Hearing Voices Movement might come to resemble the neurodiversity movement, which is largely led by people with autism who assert that they are not ill or lesser but different, in valuable and socially enriching ways.

Fernyhough leads the Hearing the Voice project at Durham University, which since 2012 has been conducting interdisciplinary research into voice-hearing with a deliberately broad focus: it examines such phenomena as the inner voices heard by writers as they try to capture their characters on the page, the hallucinations experienced by people who have taken the psychedelic ayahuasca, or the voices heard by some Christians. Fernyhough is interested in the links between voice-hearing and our inner speech, the internal voice you might hear as you read these words, the other thoughts that might be running through your mind as you do so. What we term our “inner monologue” is often a lively conversation: you might issue instructions or encouragement or rebuke yourself; you can be at once the speaker and the listener, the prosecutor and the accused.

Could it be, Fernyhough wonders, that people who hear voices are processing this inner speech differently? Could trauma cause a person to disassociate from parts of themselves, to misattribute some of this inner speech to some external being? Certainly, our inner speech suggests that our modern self image, as singular, rational and unitary beings, is unrealistic. And it’s possible, then, that the science of voice-hearing promises not only to unlock our understanding of mental illness but also to shed light on everyday consciousness, allowing us all to see ourselves more clearly. 

***

Perceptions of voice-hearing may slowly be changing. There are now more than 180 hearing voices groups across the country, making the UK an international centre for the movement, and the NHS is more receptive to the approach that it takes than many other countries’ healthcare systems. Many hearing voices network members are first referred to their local group by a sympathetic mental health professional.

One barrier to the approach being formally incorporated into clinical guidelines is that its effectiveness is hard to evaluate: it views recovery as a broad, subjective concept and does not easily lend itself to blind, randomised-control trials. But researchers, a number of them voice-hearers themselves, are working to change this. For instance, the psychologist Eleanor Longden, who hears voices, has conducted trials into the effectiveness of avatar therapy, in which people diagnosed with schizophrenia talk to digital representations of their voices.

One of the more common objections to the hearing voices ethos is that people who are seriously mentally ill are unable to make informed decisions about their care, or about the risk they pose to themselves or others. How do you know that someone who is being instructed to do things by imperceptible voices won’t seriously hurt or kill someone? “I’d ask you, where is that question even coming from?” Paul Baker said to me, pointing out that people with mental illness are much more likely to be victims than perpetrators of crime. (A recent article in the Lancet medical journal affirms this statistic.)

Andrew Grundy, a researcher at the University of Nottingham, is currently exploring how risk assessments are conducted among mental health inpatients. Grundy was hospitalised in 2007 with a diagnosis of paranoid schizophrenia – an experience that has attuned him to how conversations around the danger a person hearing voices poses to themselves or others can be “traumatising” and “stigmatising”. When Grundy suffered his breakdown, he began seeing three evil figures he calls “the men”. When things got really bad, he could not only see and hear them but feel them conduct painful experiments on him. He was told by doctors he had little chance of recovery. But a mental health worker introduced him to the hearing voices approach and, although he needed to take the powerful drug clozapine – often used as a drug of last resort – to help him gain enough mental stability to begin working with his voices, he credits the philosophy with saving his life. He realised that the voices were projections of his past trauma, and as he started to talk to and negotiate with “the men”, they lost their god-like power over him.

[See also: The Covid reset]

“Sometimes you feel like you’re telling your story and [mental health professionals] are either counting your symptoms to work out how ill you are or counting your risks to work out how risky you are. But they are not listening to your story as a story of distress, to be validated and requiring empathic understanding,” he said. He believes that mental health services are often too slow to respond to mental distress and then too quick to section people once they reach a crisis point, and argues that engaging with patients’ stories will help them regain control over their lives and help psychiatrists identify the tiny minority of people who may be unable to make decisions about their care.

Grundy’s focus is on qualitative research, believing the diversity of people’s experience of psychosis cannot be reduced to tick-boxes, but is better captured by collating rigorous, in-depth interviews and case studies. “I think people need to understand that this is an emerging evidence base, but it’s still an evidence base,” he said. “The Hearing Voices Movement isn’t a crackpot, anti-science movement. It can be dismissed as a self-help movement. It can be dismissed as anecdotal. But really it’s about re-evaluating the science.” 

***

The movement might ultimately be less about voices than about stories. It asks that psychiatry shifts its focus from symptoms – the things that are “wrong” with someone – to life experiences. It asserts that we all have a right to our own stories, the stories we tell ourselves to find meaning, to locate our place within the world, to survive.

The story of Patsy Hage and her refusal to submit to her psychiatrist’s authority has become a foundational myth for the movement, and yet she herself remains an enigma. Not long after the first hearing voices conference in 1987, Hage distanced herself from the movement she helped establish. She got married, had two children and found the voices stopped bothering her. She appeared in a 1995 BBC documentary, stylishly dressed in a black-and-white shirt, leather trousers and art deco earrings, and was filmed playing cards with her young children. In slow but near-perfect English she explained how she had managed to negotiate with her voices so that they only spoke to her after 8pm, allowing her to care for her family undisturbed during the day.

She later contributed a chapter to Romme and Escher’s 1993 book, Accepting Voices, in which she outlined Julian Jaynes’s theory of the bicameral mind. She had found it remarkable how similar the gods described in The Iliad were to the voices she heard. They dispensed threats and orders, they bullied and mocked, they provided comfort and advice. The gods were always obeyed, just as she and other voice-hearers often obeyed their voices, finding it hard to know where the voices ended and their true selves began. “We voice-hearers are probably living in the wrong era,” she concluded.

Had she been born a few centuries earlier Patsy Hage might have been seen as a visionary. Or she might have been regarded as normal, her mind no more cacophonous than anyone else’s. Her psychiatrist, Romme, told me that a few years after the BBC documentary aired Hage got divorced and the voices began to torment her once more. Romme felt regret that she was never able to fully benefit from the therapeutic approach she helped pioneer.

Hage died by assisted suicide in 2015 at the age of 60, under Dutch laws that permit euthanasia in cases of intractable psychiatric suffering. Her family did not respond to my interview request, and I received only a short message from a friend of hers. “The only thing I want to say is this,” she wrote. “Patsy was a very sweet woman who had a very hard time.” Perhaps she felt protective of Hage’s unusual story, and the way it might be retold. 

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This article appears in the 24 Mar 2021 issue of the New Statesman, Spring special 2021