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.

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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.”

Dr. Dirk Corstens

“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.

“Psychiatrists are the experts in treatment that can be helpful, so they should be involved … and try to make sure patients don’t lose insight and get into serious trouble.”

Jeffrey Swanson, psychiatry professor

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.”

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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.

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  • Schizophrenia is a crime against humanity. Please spread an awareness of this crime. The blog is based on a true story!!

    https://thestimulatedbrains.wordpress.com/2018/05/14/schizophrenia-is-a-crime-against-humanity/

    https://thestimulatedbrains.wordpress.com/2018/05/14/targeted-individuals-just-a-tip-of-the-iceberg/

    Here are further proof to understand that this is a crime. That being said, delusions are there due to meaningful interactions with things that suppose to be a coincidence and human beings are making false assumptions to judge these interactions so they end up in making false claims. This is why people think that they are being followed, their thoughts are being broadcast, their houses has been bugged etc…

    1). The voices constantly told me they were never leaving, and that I’d have to learn to deal with it. They told me that our entire society is inside of a quantum computer, and that we are all just lab rats, being studied by their people. In particular, they told me that I was being “stress tested” to see how stress affected my memory. The voices constantly asked me questions about my memory and asked what medications I was taking, whenever I took pills. I could hear these voices clear as day, as if through a radio of some kind. On a few occasions, I actually saw people that correlated with the voices, faint visual hallucinations. Mind you, prior to all of this, I led a fairly normal life with no history of psychosis or mental disorders, except mild PTSD and ADD.”” – http://hvn.forumatic.com/viewtopic.php?f=2&t=551

    2). Raina Walks “if i needed to get somewhere i did not know the directions to…they would literally lead me there without me having looked at a map…just with them directing me…it is heady stuff…” – http://www.mentalhealthforum.net/forum/thread36344.html

    3). one time though the voices told me something i couldn’t have known – they informed me that the 9/11 attack was about to happen in new york.. ten days later it transpired…(This voice hearers mind generated this voices? He knew this attack? Obviously he was surprised to see. When are we using our common sense?) -http://www.bluelight.org/vb/archive/index.php/t-469466.html

    4). “My voice gathers information from around the globe and gives me heads up months in advance for important events. -http://www.hearing-voices.org/voices-visions/comment-page-2/

    5). Actually, they can do any voice they want (man, woman, child, God, devil, British guy, Arnold Schwarzenegger, a Mexican, someone I know, etc.). It’s a skill they have that I’ve learned to appreciate, and I find incredibly entertaining. – (Can we imitate anyone’s voice? If not then why would someone get this ability when they are mentally ill ? Is that a mental illness or a skill? ) http://hvn.forumatic.com/viewtopic.php?f=2&t=1203

  • u hav implants n ur nasal passage n n ur ears.its psychotrinic weapons n mind control.THE POLICE N DOCTORS R CONTROLLED N WONT HELP .DONT TAKE MEDUCATION.its ALIENS KILLING US I HAVE PROOF AND HAVE SEEN THEM.THEY CAN SEE THRU UR EYES AND HEAR UR THOUGHTS. LOOK UP NEUROPHONE.bless u tell everyone

  • I listed my bells and whistles because I am aware of many who pretend to be schooled. I also have a “real life” degree. One sister diagnosed with schizophrenia with hallucinations, two brothers (one committed suicide), with schizophrenia and paranoid, my father with borderline personality disorder, and my mother with munchhausens (I was her “proxy” until I left home).
    Gavin, I hope you find the one you would like to speak to…My heart breaks for what you are going through. My siblings have experienced similar things. Have you tried listening to classical music? One of my brothers found it gave him a respite from the constant harassment of the voices. My sister found some relief in crochet, because she had to focus to complete her project. My younger brother found some relief in exercise.
    Now to Dr. Pie…
    Sir, I am hopeful that you will listen to a voice that has real life experience and education. The example you shared is very much like mine. We die a thousand deaths with our loved ones. I was diagnosed with PTSD because I had no tools or skill sets to help my family. I learned very early that it was important to earn their trust. Fairness is also important, since they could not handle someone who said one thing and did something else. I did not argue with them about what they were hearing, but I did speak in a low monotone which they could focus on and concentrated on the pattern of what the voices were trying to get them to do. I found that they seemed to be walking in two worlds and at best, they were wrestling with an unseen enemy. I tried to be the ally they could trust to love them and get treatments that took into account what these ‘evil voices’ were trying to make them do or say. Sometimes medications helped them to find some peace, but finding the right combinations was always a challenge. It took a lot of time and observation, and many times the Drs. and treatments were focused on low cost, quick, and quieting behavior…not their minds. Six visits and monthly follow-ups are not enough. I realize what I did was probably considered dangerous, but I was also fighting for my life in “hell house”. I had no choice…but I did and do love them all.

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