Lisa Forestell has heard voices as long as she’s had memories. They have distinct personalities and sounds: There’s a middle-aged male voice that talks to her behind her left ear and two young female voices that perch behind her right.
“They’re playful and silly and they try to cheer me up when I’m sad,” says Forestell, a 49-year-old director of community support at Western Massachusetts Recovery Learning Community, which helps people who have experienced extreme emotional distress, including hearing voices, in Pittsfield, Massachusetts.
For years, Forestell didn’t talk about what talked to her. “I had learned that if I told people, I’d be sent to a psychiatrist who would want the voices to go away,” she says. “I’m not someone who wants my voices to go away.”
But today, mental health professionals don’t necessarily want voices, like the ones Forestell hears, to go away either. In study after study, researchers have found that psychotic experiences like hearing voices are relatively common — and not always a sign of mental illness.
“Psychiatrists used to be taught that people who heard voices probably have schizophrenia or, if they didn’t, they’d be going on to get it,” says Dr. John McGrath, a professor of psychiatry at The University of Queensland in Australia and researcher at the Queensland Brain Institute. In a study published in May, he and a team of researchers analyzed data from more than 31,000 people in 18 countries and found that 2.5 percent of the population has heard something and 3.8 percent has seen something that others didn’t at some point in their lives. Another study published in the Scandinavian Journal of Psychology last month found that more than 7 percent of the 2,533 people surveyed reported auditory hallucinations in their lives. By comparison, the percentage of people who have schizophrenia is close to 1 percent.
“What the new study shows very clearly is that in fact [psychotic experiences] are more common than we had been taught,” McGrath says. “What we really have to do is go back and revise how these symptoms fit into the profile of mental illness.”
Where Voices Come From
There are lots of potential reasons someone might hear voices, including anxiety, stress, depression and a history of trauma — all good reasons to seek mental health help. There might also be genetic and environmental factors that make people vulnerable to both hearing voices and the psychiatric disorders associated with them, says Dr. William Carpenter, a psychiatry professor at the University of Maryland and chair of the Psychotic Disorders Work Group for the American Psychiatric Association’s latest Diagnostic and Statistical Manual.
Forestell, who was isolated, lonely and sexually abused as a young child when her family lived abroad in Thailand, thinks trauma could contribute to her voice hearing, but that doesn’t explain everything. While experts surmise that trauma survivors hear voices saying things they can’t express, Forestell doesn’t perceive her voices as a part of her. “I don’t fit into any boxes,” she says.
Cultural factors, too, play a role, McGrath says. In some cultures, for instance, it’s considered normal to hear the voice of God, while in others, it’s common to hear or see signs of the recently deceased, he says. His research found that women were more likely to report psychotic experiences than men (6.6 percent versus 5 percent), and that people in middle- and high-income countries are more likely to have such experiences than people in low-income countries (7.2 percent and 6.8 percent versus 3.2 percent, respectively).
McGrath and collaborators are now working to map voice hearing experiences across societies. “If we can capture that, we’ll probably be better able to understand how they link to diseases,” he says.
Mental Illness or Not?
Similar to how you can feel anxious about an upcoming work event without having social anxiety disorder or not “in the mood” without having a sexual dysfunction, research suggests you can have hallucinations without having a psychiatric disorder — though the former examples are far more common. And like any mental illness, a single symptom does not merit a psychiatric diagnosis.
“The way we distinguish the ill meriting clinical care from the non-ill is whether the experiences are causing distress, dysfunction or reduced capacity in some way,” Carpenter says.
Forestell’s voices, for one, don’t keep her from living a happy, productive life. She has a full-time job, four kids and is engaged to be married. She enjoys hiking, skiing and live music. “I have all of these other things to show that I’m a whole person and not just a voice hearer,” she says.
Still, people who hear voices often do have a mental illness or may be at higher risk for developing one, says Dr. Joseph Pierre, co-chief of the Schizophrenia Treatment Unit at VA West Los Angeles Healthcare Center. A 2011 study in the Journal of Clinical Psychiatry, which compared 118 people who hear voices at least once a month and have a psychotic diagnosis to 111 people who hear voices at least once a month but don’t have mental illness, found that people with psychosis heard voices more often and those voices expressed negative emotions. The psychotic subjects also had little control over their voices, which tended to start speaking up later in their lives.
As Pierre wrote in a 2010 study, auditory hallucinations might be best thought of like coughs — “common experiences that are often, but not always, symptoms of pathology associated with a larger illness.”
From Silencing to Coping
Caroline White was about 8 years old when she first heard a voice. It was a male voice that whispered her family was in danger because of the Gulf War. Later, the voice said her parents were getting divorced. Every now and then, it comes back when she’s stressed. “It was an experience that was difficult to manage at times,” says White, a 32-year-old in Holyoke, Massachusetts. (Her family was safe and her parents are still together.)
Over the years, White has tried to cope with the voice and other hallucinations in a lot of destructive ways, including through self-harm, drugs and alcohol. She has been hospitalized for psychiatric illness, lived for years in a halfway house for people with mental health challenges and has taken psychiatric medications, “but there were always more consequences” than benefits from the drugs, she says.
Then, she found the Hearing Voices Network, an organization that supports people “who hear voices, see visions or have other unusual perceptions,” according to the website. The organization, which Forestell says has chapters in at least 26 countries, connects people with experiences like White’s and encourages them to find meaning in their perceptions rather than to quiet them. For White, who has also had positive hallucinations, attending the network’s group sessions worked. She now lives independently and works part-time in a mental health system and part-time as a training coordinator for the Hearing Voices Research and Development Project, which aims to expand the Hearing Voices Network and study the groups’ effectiveness.
White credits the Hearing Voices Network with aiding in her recovery by framing her voices as a gift, not an illness. “I was able to talk about it, and we were able to sit down and think: ‘What might this voice be trying to communicate?'” says White, who also sees a therapist who helps her understand the voices but doesn’t try to silence them. “Sometimes it’s a metaphor; sometimes it’s an indicator that there’s a stress in your life that you need to look at.”
Of course, plenty of people need professional help to cope with voices or treat or prevent mental illness, and it’s not clear yet which voice hearers may be OK without it. Experts suggest talking to a professional about voice hearing experiences — even if it’s in addition to support from a group like the Hearing Voices Network. The two aren’t necessarily at odds, Pierre says. “It’s not surprising that someone would benefit from a supportive network of people,” he says. “A good therapist would take a similar stance.”
Forestell, a Hearing Voices Network board member, doesn’t think the network’s stance “flies in the face of psychiatry.” Still, the peer support groups work for many voice hearers, she says. “The groups don’t “place a symptomology or badness or brokenness on our experiences, but understand that things happen, just like a flat tire,” she says. “And you can get lots of help for a flat tire, but you eventually learn to handle a flat tire on your own.”