Do patients who hear voices have the right to refuse psychiatric medicine? A growing movement says yes

LONDON —  The voices came often: three men, mocking her. Telling her she was stupid. Urging her to kill herself.  Psychiatrists diagnosed her with schizophrenia.

But Rachel Waddingham now rejects that diagnosis.

After more than a decade of taking medications and cycling in and out of mental hospitals, Waddingham has embraced a new way of thinking about her voices. She no longer tries to banish them with drugs, but accepts them as a part of herself. She now considers them a reflection of her feelings and experiences, signals that help her understand when and why she feels overwhelmed —  rather than authorities whose commands she should follow.

This approach underlies a controversial international movement that raises fundamental questions about what it means to be mentally ill. The question at the heart of the debate: Do patients who hear voices — and suffer other symptoms that psychiatrists would consider severe —  have the right to direct their treatment, even if that means rejecting conventional therapies, such as psychiatric medication?

Some mainstream psychiatrists have concerns that people who are out of touch with reality and spurn treatment may pose a danger to themselves or others.

But the movement, which began in the Netherlands, has spread rapidly in the past three decades; there are now “hearing voices” support groups on all five continents, and over 180 in the U.K., alone, anchored by the Hearing Voices Network. The idea has been slower to take hold in the U.S., which has a strong medical model for treating mental illness, but is gaining steam there, too.

“For me, the bottom line is to find the most effective way of treating [the voices] — if the person wants to treat them — which should always include non-medical and medical options,” said David Penn, a psychology and neuroscience professor at the University of North Carolina at Chapel Hill. Penn, who studies psychosocial treatment for schizophrenia, said tactics such as meditation, exercise, and cognitive behavioral therapy can be viable options.

There are now about 90 support groups across the U.S., according to the Hearing Voices Network USA. Just last month, advocates of the approach held five training sessions for support group leaders. And in August, the World Hearing Voices Congress will be held at Boston University, the first time the meeting will take place in the U.S. Organizers are hoping for about 500 attendees, though some have expressed worries about having to apply for visas to the U.S., which ask about mental health status.

Many in the movement say they’re not mentally ill because their hallucinations don’t cause them distress or interfere significantly with their ability to move productively through life. They say diagnoses are too often subjective and unreliable. Indeed, some say that being labelled mentally ill — or being pushed to go on medications —  has caused them more problems than the voices they hear.

The movement’s leaders are careful to acknowledge that antipsychotics and other medications can work for some patients. But they also note that there is a trade-off between those benefits, which can be substantial, and severe and often unpleasant side effects, such as significant weight gain that can lead to diabetes. And there are questions about the long-term effectiveness of psychiatric medications.

In workshops and support groups, movement advocates try to reassure people who are frightened by the experience of hearing voices that it’s not unusual and doesn’t necessarily portend a spiral into psychosis. They offer concrete strategies for coping, including trying to set up appointments to talk to the voices at periodic intervals — and wearing headphones while doing so, so it will look to the outside world like you’re simply talking on the phone. A workshop at the World Hearing Voices Congress promises tips on negotiating alternative realities.

“For us, voices are a signal, they are something that tell you about your life,” said Dr. Dirk Corstens, a psychiatrist and psychotherapist in Maastricht in the Netherlands and a leader in the movement. “You have to listen to [them]. Not obey, but listen.”

Many recovered voice hearers say that once they engage with the voices, their mental health improves — and the voices become nicer as well.

Since going off her medications, for instance, Waddingham has been able to take on demanding full-time jobs, such as serving as a past project manager at a nonprofit mental health advocacy organization. And she’s gotten married.

Now 39, she lives in Faversham, England, about 50 miles east of London, works as a therapist, and gives speeches about voice hearing and recovery strategies around the country. She’s also writing a book and applying for Ph.D. programs.

She hears more voices than ever — about 13 at the moment, she estimates. And they continue to tell her to hurt herself or others. Waddingham acknowledges that hearing the voices “can be difficult.” She still has days when it’s hard to cope and she needs to sit home alone and pull a blanket around her. Still, she chooses not to use medication —  even though the drugs did reduce the number of voices she heard.

“I’m not a tragic case,” she said.

‘Unusual, but not pathological’

Many psychiatrists see losing touch with reality —  for example, hearing voices — as a quintessential symptom of severe mental illness and drugs as the most effective treatment to keep the patients from harming themselves or others.

There is some research to support this worry: In one seminal U.S. study of 1,410 people with schizophrenia, those who experienced hallucinations, including hearing voices that others don’t hear, were more likely to commit serious violence, though the overall likelihood of violence was still low, according to Jeffrey Swanson, a professor of psychiatry and behavioral sciences at Duke University. He was a co-author on that paper, published in 2006 in the Archives of General Psychiatry.

But Swanson said there’s “a big difference” between patients who know that the voices are only being heard by themselves and those who don’t.

Most psychiatrists these days want patients to “share in the decision-making” and come up with a personalized treatment plan, Swanson said. “At the same time,” he added, “psychiatrists are the experts in treatment that can be helpful, so they should be involved, monitor what is happening, and try to make sure patients don’t lose insight and get into serious trouble.”

How common is it to hear voices? The numbers vary widely, but one review of 17 existing studies across nine countries found that, on average, about 1 in 8 people surveyed reported an experience of hearing a voice that wasn’t real.

“The findings support the current movement away from pathological models of unusual experiences and towards understanding voice-hearing as occurring on a continuum in the general population,” the researchers wrote in the study, published in 2011 in the Journal of Mental Health.

Charles Fernyhough, a psychology professor at Durham University in the U.K. who studies the topic, said one theory holds that the phenomenon appears to be similar to the self-talk that everyone does. It seems a certain percentage of people don’t experience their internal monologues as being something that they themselves have produced, leading them to experience the voices as coming from another person.

Voice hearing “is unusual, but it’s not in itself pathological,” Fernyhough said.

Finding comfort in invisible friends

Lisa Forestell, of Somerville, Mass., has heard voices for as long as she can remember. When she was very young, she thought everyone did, and spoke out loud to hers, two girls and a boy. “I didn’t seem to notice any sort of negative feedback from the rest of my world,” she said.

But when she began school, a teacher told her that the voices weren’t allowed to come to school. Forestell “made a pact” with her voices that they would only talk to her in private. It mostly worked.

She still was teased, though. And she noticed that in the media, people who heard voices were often depicted as crazy or criminal. “What [these experiences] underscored for me is that I was ‘other.’ I was weird,” said Forestell, who is now 51. “I considered it was a superpower or a cool thing, but really the message that was coming to me was that it  wasn’t a good thing.”

Though she found her voices meaningful and comforting — a little group of best friends who happened to be in her head — she didn’t tell anyone again for decades.

Only in 2009, while working for the Western Massachusetts Recovery Learning Community, which wanted to start a voice-hearers’ group, did she finally confide in her supervisor. “It was terrifying,” Forestell said.

One of the voices has grown up with her — the other two chose to remain children — and all are often sounding boards. When she first decided to go public as a voice hearer, for instance, the voices were cautious and said they didn’t want to be quoted. Now they are encouraging her to speak out, Forestell said.

For Rachel Waddingham, who first heard the voices when she was 18, learning to cope with them without medication changed her life.

After coming across the Hearing Voices Network about 15 years ago, she made a conscious decision not to identify as mentally ill. When she told her long-term psychiatrist she wanted to taper off her medication, she got resistance. “Why won’t you let me help you?” the psychiatrist asked.

But Waddingham said if she had a choice, she wouldn’t want to get rid of her voices. They have helped her in many ways: She is good at focusing because she has to block out the voices and skilled at managing conflict because the voices can be “pretty harsh.” She also thinks she is more generous as a person, more open to others’ perspectives and more in touch with her own anxieties. The voices serve as a kind of early warning system for internal stress.

“If I pay attention, I know before it becomes an issue,” she said.

Correction: An earlier version of this story misspelled the name of Lisa Forestell.