Voices in your head: How a support group helps members cope
Some professionals worry self-help groups romanticize psychosis
Justin Day hears 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 myself they're paranoid delusions."
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Intervoice, a non-profit international organization created to promote the idea that hearing voices is a "normal though unusual variation in human behaviour," suggests two to four per cent of the population hears voices at some point.
Group facilitator Andrea Horowitz of the North Shore Adult Community Mental Health Team says it's a stark contrast to the conventional medical approach, where hearing voices is treated as a symptom of mental illness to be suppressed with medication.
"The hearing voices group empowers people and allows 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 30 countries. Canada has been slow to adopt the approach, but groups can be found in Vancouver, Toronto, Winnipeg, Montreal, Moncton, N.B., and St. John's.
In the North Vancouver group's weekly meetings, members share their voice-hearing experiences and coping strategies.
Andrea Merrick, 47, relates her story. Diagnosed with schizophrenia in her early 20s, she's been hospitalized twice and estimates she has tried 20 medications, none of which helped eliminate 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, to a more positive place," says Merrick.
HVN groups give voice-hearers a sense of community where they're seen as people rather than patients, says Horowitz.
"If you call it an auditory hallucination, there's nowhere to go except take medication to fix that. If you talk about hearing voices, you're acknowledging the fact that it's not necessarily an illness."
"Having a Hearing Voices group allowed me to be actually honest about my inner experience and not have to carry around the feeling that there's something wrong with me," says Emberly, 54.
She says she's heard voices since she was a child, although they haven't impeded her from 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 or trauma.
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That's backed by research suggesting 70 per cent of voice hearers started hearing voices after an intensely emotional event such as an accident, divorce, bereavement or sexual or physical abuse.
The medical community has mixed reactions to HVN and the rise of self-help groups for people diagnosed with schizophrenia.
But one of the hallmarks of psychosis, he says, is that a patient may not be able to recognize he or she is sick, a condition known as agnosia. He says many of his mental health patients need medication and sometimes involuntary hospitalization.
"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?' "
Some in the psychiatric community have criticized the founder of HVN — Dutch psychiatrist Dr. Marius Romme — for 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.
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 psychiatric care and medical care. Something gets lost in translation. Trying to de-stigmatize illness can be interpreted 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 take medications, or not engage in psychotherapy. And what we really know from research is that treatment does work."
Still, Andrea Horowitz of the North Vancouver group, where some voice-hearers take medication 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 your medication, because you're not really ill.' It allows a space for people to explore their own experience in whatever way makes sense for them."