Voices in your head: How a support group helps members cope

The Hearing Voices Network is a worldwide coalition of small support groups where members learn strategies to cope with voices in their head, whatever form they take.

Some professionals worry self-help groups romanticize psychosis

Duncan McCue CBC News Posted: Dec 04, 2015 1:17 PM EST | Last Updated: December 8, 2015

Support Group for People Who Hear Voices

9 years ago

1:14

An unconventional support group encourages members who hear voices to live with them by paying attention to "good voices" and ignoring the bad.

After a warm salutation and some deep-breathing exercises, members of the North ShoreHearing Voices Support Groupin Vancouver settle into talk about the voices in their heads.

"It's hard not to believe in demons when the demons keep talking to you," says Rory Higgs,a youngman with a pinkish streak in his hair.

Justin Dayhears the voice of a woman he used to know, a steady stream of derogatory comments."'Get out of my life, you're a weirdo, you're a loser,'" he shares unhappily. "I have to tell myselfthey're paranoid delusions."

Others reveal how voices help them through the day. Sometimes birds talk to Jael Emberly. "I get goodvoices that challenge my own insecurities," she says.

Learning to live with the voices is what's behind the Hearing Voices Network (HVN), aworldwide coalition of small support groups where voice-hearers learn strategies tocope with voices in their head, whatever form they take.

Intervoice, anon-profit international organization created to promote theidea that hearing voices is a "normal though unusual variation in human behaviour," suggests two to fourper cent of the population hears voices atsome point.

Andrea Horowitz of the North Shore Adult Community Mental Health Team (left, with a member of a hearing voices group) says such groups empower people to play a role in their own recovery. (CBC)

Group facilitator Andrea Horowitz of the North Shore Adult Community Mental Health Teamsays it's a stark contrast to the conventional medical approach, where hearing voices is treated asa symptom of mental illness to be suppressedwith medication.

"The person who was having this experience would go and see the psychiatrist, who would try tofix them, and that really took that onus off the person to take control of their own lives," saysHorowitz, an occupational therapist.

"The hearing voices group empowers people andallows them to understand they have a role to play in their recovery."

Hearing Voices groups, first formed in the Netherlands in 1987, have spread to 30countries.Canada has been slow to adopt the approach, but groups can be found inVancouver, Toronto, Winnipeg, Montreal, Moncton, N.B.,and St. John's.

In the North Vancouver group's weekly meetings, members share their voice-hearing experiencesand coping strategies.

Dr. Bill MacEwan (left, with a patient), says many people with psychosis or schizophrenia dont recognize theyre ill. (CBC)

Andrea Merrick, 47, relates her story. Diagnosed with schizophrenia in her early 20s, she's beenhospitalized twice and estimates she has tried 20medications, none of which helpedeliminate taunting voices or her increasing paranoia.

Five years ago, she turned her back on drugs. Now she employs her "good voices" to help battle her "bad voices."

"The good voices helped me get myself out of this negative place where I was being attacked, toa more positive place," says Merrick.

From the video You Are Not Alone produced by Intervoice, an international organization that provides support to Hearing Voices groups in 30 countries. (Intervoice)

HVN groups give voice-hearers a sense of community where they're seen as people rather thanpatients, says Horowitz.

"If you call it an auditory hallucination, there's nowhere to go excepttake medication to fix that. If you talk about hearing voices, you're acknowledging the fact thatit's not necessarily an illness."

Over and over, HVN members say it's a relief to be treated with dignity rather than the stigmaand fear they're accustomed to.

"Having a Hearing Voices group allowed me to be actually honest about my inner experienceand not have to carry around the feeling that there's something wrong with me," saysEmberly, 54.

Shesays she's heard voices since she was a child, although they haven't impeded herfrom raising her daughter or holding down a job as a peer-support worker.

A key tenet of HVN is that voices often surface after a person experiences extreme stress ortrauma.

Notable people who have heard voices: Socrates, William Blake, Sigmund Freud, Mahatma Gandhi, Joan of Arc, Brian Wilson of The Beach Boys

That's backed by research suggesting 70 per centof voice hearers started hearing voices afteran intensely emotional event such as an accident, divorce, bereavementor sexual orphysical abuse.

The medical community has mixed reactions to HVN and the rise of self-help groups for peoplediagnosed with schizophrenia.

Dr. Bill MacEwan, the head of psychiatry at St. Paul's Hospital in Vancouver, encourages HVNas a step toward empowering mental health patients.

But one of the hallmarks of psychosis, hesays, is that a patient may not be able to recognize he or she is sick,a condition known asagnosia.He says many of his mental health patients need medication andsometimes involuntaryhospitalization.

"We have a Mental Health Act, because many people with psychosis or schizophrenia lack that insight and can get themselves into terrible situations," says MacEwan.

"When you have people like that who do not have that insight, you really have to do everything you can to say, 'How do we get you into safety and treatment and get rid of that?' "

Members of the North Shore Hearing Voices Support Group learn how to cope with the voices in their heads. (CBC)

Some in the psychiatric community have criticized the founder of HVN Dutch psychiatristDr. Marius Rommefor offering little evidence-based research to support his approach.

Romme makes no bones about his frustrations with conventional psychiatric models of treating patients diagnosed with schizophrenia, suggesting the only way to recover from the illness is outside psychiatry.

Dr. Joe Pierre, a professor of psychiatry at the University of California Los Angeles, agrees with HVN that medications have side-effects and aren't always effective, and clinicians should work collaboratively with patients.

VIDEO: The problem with support groups for people hearing voices

But he warns of dangers if HVN groups romanticize the harsh realities of psychosis.

"Some of the messages talked about in those groups are really a message of avoiding psychiatriccare and medical care. Something gets lost in translation. Trying to de-stigmatize illness can beinterpreted as saying maybe you're not ill at all," says Dr. Pierre.

"That's potentially dangerous because then it leads people not to come in to treatment or not takemedications, or not engage in psychotherapy. And what we really know from research is thattreatment does work."

Still, Andrea Horowitz of the North Vancouver group,where some voice-hearers takemedication and some don't,rejects any suggestion that the HVN approach is "anti-medication."

"In a hearing voices group, no one would ever say to (a voice-hearer), 'You should come off yourmedication, because you're not really ill.' It allows a space for people to explore their ownexperience in whatever way makes sense for them."

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External Links

Hearing Voices Network

North Shore (Vancouver) Hearing Voices Support Group

Intervoice

Voices in your head: How a support group helps members cope

Some professionals worry self-help groups romanticize psychosis

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