The Voices Inside Their Heads

Gail Hornstein's Approach To Understanding Madness

As a teenager Gail Hornstein developed a fascination with first-person accounts of mental illness, and in the decades since, she has collected more than seven hundred patient memoirs, autobiographies, and witness testimonies. She likens them to survivor accounts or slave narratives, with patients struggling against the psychiatric system to make their voices heard.

According to the National Institute of Mental Health, approximately one in four Americans suffers from a diagnosable mental disorder. Our society has gone further than any other in classifying unwanted behaviors and emotions as diseases demanding medical — and often pharmaceutical — treatment.

Hornstein, now a Mount Holyoke College professor of psychology, questions whether this labeling benefits those being labeled. She also rejects the idea that psychiatric patients, however severe their symptoms, have a physical disease. Even schizophrenia and other types of psychosis, Hornstein suggests, can result from trauma, abuse, and oppression. She offers a popular course for psychology majors in which they read only books by patients, and she urges a more open-minded inquiry into what causes mental illness and how people get better.

The obvious place to begin looking for answers to patients’ problems, Hornstein says, is with patients themselves. She’s passionately dedicated to uncovering how people experience their own “madness,” rather than accepting what psychiatrists and psychologists tell us. From reading memoirs of those diagnosed as mentally ill, she knows that they often credit fellow patients with helping them recover, and she argues that peer support and empathetic listening can set even severely debilitated patients on the path toward recovery.

Hornstein’s first book, To Redeem One Person Is to Redeem the World: The Life of Frieda Fromm-Reichmann, is a biography of a maverick psychiatrist who used psychotherapy with patients considered to be unreachable by talk therapy. (The 1960s best-selling novel I Never Promised You a Rose Garden, by Joanne Greenberg, includes a fictionalized version of Fromm-Reichmann.) Hornstein was in London, England, researching her second book, Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness, when she happened upon a collection of videotapes of mental patients telling their own stories. This discovery led her to the Hearing Voices Network (www.hearing-voices.org), an international organization in which empathy and nonhierarchical interactions supplant diagnostic labels and the traditional doctor-patient relationship. When Hornstein returned home to Massachusetts, she started one of the first Hearing Voices Network (hvn) support groups in the U.S. In addition to addressing professional and lay audiences as a public speaker, she now serves as cofacilitator of the group and trains people across the country in hvn’s approach. She has free information and lists of resources on her website, www.gailhornstein.com.

On a sunny afternoon Hornstein and I sat down to talk in her book-lined office at Mount Holyoke. Several times during the interview she gently corrected me when I used a “pejorative, medicalized” word like paranoia. What most impressed me was her refreshing openness to real-life experience as medical evidence. She refused to be limited by the theoretical constructs of her discipline or to believe that some people are beyond hope.

Frisch: You express enormous empathy for those labeled “mentally ill,” yet you avoid romanticizing their lives. How do you walk this fine line?

Hornstein: I try to understand people as they understand themselves. If you ask them what their experience is or read their own accounts, you’ll find they can be articulate and psychologically sophisticated. Even people who lack formal education can offer highly nuanced descriptions of their emotional lives. I’ve adopted a phrase from my uk colleagues: “experts of their own experience.” This view helps me avoid either romanticizing their experience — seeing it in a more positive way than they do — or seeing it only as a tragedy with no redemptive qualities.

Emotional distress is highly individualized, and we shouldn’t come to any general conclusions about it. There are people who feel they’ve learned something profound from the experience of hearing voices, but there are plenty of others who are frightened and just want the voices to go away. One woman said to me, “If I could wake up tomorrow and not hear any voices, I would open up a bottle of champagne.” Yet she’d discovered the strength to get through it.

Frisch: Why do you feel so strongly about avoiding the phrase “mental illness”?

Hornstein: The term “mental illness” is heavily charged, politicized, and ambiguous. I prefer to talk about “anomalous experiences,” “extreme emotions,” and “emotional distress.” The main reason I don’t use medical language is that people who are suffering often don’t find it very helpful. No one experiences “schizophrenia” — that’s just a technical name for a lot of complicated feelings.

People who have been taught that “mental illnesses are brain diseases” see psychiatric patients as dangerous and unlikely to recover. And those in crisis are often understandably reluctant to consult mental-health professionals, because the stigma of mental illness is so severe: it’s possible to lose your job, your home, and your family as a consequence of being diagnosed with a mental illness. In cultures that take a social view of emotional distress, by contrast, people more readily seek help because they aren’t as likely to be ostracized and are assumed to be capable of full recovery.

The World Health Organization did an international study comparing outcomes for patients diagnosed with schizophrenia in “developed” countries — including the U.S., the United Kingdom, Denmark, and others — and in “developing” countries such as Colombia, Nigeria, and India. To their astonishment, they found that outcomes were much better in the developing countries. As often happens when a study produces unexpected results, the findings weren’t believed at first. So the study was repeated a few years later with a more stringent definition of what constituted improvement for the patients. The results were the same.

Two hypotheses have been put forward to explain these findings. One is that developing countries don’t use medications over the long term because they can’t afford it. Without long-term medication, patients don’t become chronically disabled. The other hypothesis is that people in developing countries are more likely to be cared for at home and be a part of their community, rather than being isolated or sent away to a hospital, and this helps them recover.

Frisch: How does what is commonly called “mental illness” differ from physical disease?

Hornstein: In psychiatry mental illness is a metaphor imposed on people’s behavior. There aren’t any physical methods of diagnosing a mental illness: There’s no blood test. There’s no mri. So-called mental illnesses are diagnosed on the basis of behavior. The “chemical-imbalance” theory was invented by the marketing departments of drug companies to try to convince doctors to prescribe their products. Some doctors say depression is just like diabetes: you have an imbalance of a neurotransmitter, the way a diabetic might need more or less insulin, and this drug will restore your balance. But with diabetes it’s possible to measure the amount of sugar and insulin in your blood. We know what a balanced level is. No doctor who has given anyone an antidepressant has ever measured the level of a neurotransmitter in the patient’s body. There is no independent means by which to tell if someone has a “chemical imbalance.”

Frisch: Do any mental illnesses have a known physiological basis?

Hornstein: The initial symptoms of Huntington’s disease resemble the symptoms of mental illness. When folk singer Woody Guthrie first manifested Huntington’s disease, he was sent to a psychiatric hospital. Similarly people in the early stages of brain cancer may behave in anomalous ways. If you don’t know they have cancer, you might think they’re having a psychiatric breakdown. But once they get a cat scan, you can see the brain tumor. You can’t see schizophrenia.

Frisch: I have always taken it for granted that only mystics or crazy people hear voices, but you suggest that it’s more common than we think.

Hornstein: Many people who hear voices never attract the attention of the psychiatric system. Estimates are that 4 percent of the uk population hears voices — approximately the same percent that has asthma. In Western society we most often associate hearing voices with illness. If we lived in a part of the world that was given to greater religiosity, unusual psychological experiences might be labeled as divine gifts. All the major religions of the world include figures who heard voices or had other anomalous psychological experiences. If the pastor in an Evangelical Christian church tells the congregation, “God spoke to me last night,” no one in that church thinks he has lost his mind.

Whether a phenomenon is considered “abnormal” or not depends on the circumstances, the person’s suffering, the reactions of others, and many more factors. One of the main goals of my book Agnes’s Jacket is to give readers the opportunity to learn about people who have unusual experiences and to encourage them to tolerate a wider range of behavior in themselves and others.

Frisch: Of your first visit to a Hearing Voices Network meeting in the uk, you write, “People whose doctors had dismissed them as chronic schizophrenics or treatment-resistant cases were sipping tea and thoughtfully analyzing each other’s actions and feelings.” How could this be?

Hornstein: One of the biggest myths about people who are “out of touch with reality” is that they don’t have any insight into their own experience. Another myth, which unfortunately comes straight from psychiatric textbooks, is that a person who has a psychotic experience can’t empathize with others, that such people are narcissistic and egocentric.

On the basis of my experiences with support groups, I find that’s just wrong. Many people who come to meetings have been in the mental-health system a long time. They might be heavily medicated and shuffling and stumbling from the side effects of prolonged medication. Frankly they don’t immediately strike you as people who could make insightful, empathic comments. But I have learned that when these people, who perhaps have been written off by everyone else, feel supported by the group, they are likely to be extremely helpful, to listen intently, and to share enlightening observations.

We shouldn’t make assumptions about the capabilities of a person diagnosed with schizophrenia or bipolar illness or major depression. Someone who is in a distressed state might be incapable at that moment of being empathic to others, but he or she might be perfectly capable an hour later. When anyone is in a rage or overwhelmed or terrified, he or she is not going to be able to listen or make helpful suggestions. But these feelings don’t last forever. That’s how we should start to think about psychotic states. They vary in intensity and duration.

Frisch: What is hearing voices like?

Hornstein: It is not the “inner speech” most of us are familiar with, where we tell ourselves to do something, or admonish ourselves. True voice hearing is a different phenomenon. Many of those who suffer from it hear these voices through their ears, the way you are hearing my voice. Most people find it highly distressing. The experience often becomes overwhelming, especially if they don’t tell anyone, which is common. Imagine if I started screaming obscenities at you and accusing you of things that only you would know you were potentially guilty of. It would be terrifying.

Of course, the voices are different for each person. But it is possible for us to describe them to one another and thus identify similarities. I am often amazed at how people in peer support groups grasp the subtleties of each other’s experiences. It’s rare for them to have anyone else listen attentively to what they are going through.

Frisch: I was surprised to hear that the group members’ psychiatrists had never inquired about what their voices were saying.

Hornstein: Psychiatrists typically don’t ask people about the content of their voices because they believe that it will cause patients to further “lose touch with reality.” In their view delving into the content of such experiences might push a patient into isolation and withdrawal. Psychiatrists sometimes call this “colluding with the illness.”

I don’t agree with that theory. Twenty years of research by the Hearing Voices Network has shown that, however terrifying it is for the person to talk about what the voices are saying, doing so seems to diminish the voices’ intensity. So we know now that it’s sensible to talk to people about what their voices say. Unfortunately the overwhelming majority of people diagnosed as “psychotic” do not see psychotherapists, who might help them articulate these experiences. Instead they see people in the public mental-health system and are treated with medication.

When people are able to analyze what their voices are saying, they can respond to them more appropriately. Ignoring them only makes it worse, just as someone who is trying to attract our attention will start yelling louder if we ignore them.

Last week, at the Hearing Voices Network group that I helped start in Holyoke, Massachusetts, someone came for the first time. She was tormented by the voices she heard. They were driving her away from her family and causing her to consider suicide, she said. She was very suspicious of the group and went around the room and asked each of us if we heard voices, too. When she found out that I didn’t, she seemed even more reluctant to talk. But after listening to the other members for a while, she began to tell us about her voices. By the end of the meeting she was thanking people profusely and saying she would come back next week.

Frisch: In other words, people want to know they aren’t alone in their experience.

Hornstein: Yes. No matter how accepting family and friends are, people find it easier to talk about hearing voices with people who have also heard them.

Frisch: Do you have any hypotheses about why people hear voices?

Hornstein: I think the most common reason is that they have experienced some kind of trauma that is too unbearable to remember directly. So it comes back to them in this form. Take childhood sexual abuse, for example: Besides the actual abuse, the abuser often tells the child, “Don’t ever tell anyone about this, or I’ll kill you,” or, “I’ll kill your family.” The experience was already terrifying, and now the victim is afraid to talk about it. The younger the abused is and the more brutal the experience, the less likely she or he is to be able to integrate it. Part of our mind can split off and turn against us and scream accusations. It’s not necessarily the abuser’s voice, but it might use his or her tone.

Sometimes multiple voices talk to each other about the person. One voice might say, “She’s so stupid, isn’t she?” And another voice will say, “Yeah, she doesn’t even know how to do this.” The person is a mute witness to the conversation. This, too, might mirror a traumatic experience from the past.

The unconscious operates autonomously, the way digestion does: we don’t have control over it. If you have an experience that you can’t assimilate into the rest of your personality, it can take on a life of its own.

People often do everything possible to try to keep from hearing the voices. They wear earplugs or play loud music. Some hear a noise that’s not quite a voice. It sounds like mumbling or static or animals or a machine. So calling it “hearing voices” isn’t precisely accurate for everyone. I prefer that term, though, rather than “auditory hallucinations,” because it’s closer to most people’s actual experience.

Frisch: Do people ever hear voices that say supportive things?

Hornstein: Absolutely. The Hearing Voices Network tries to help people marshal a positive voice that can stand up to the more negative ones. Carl Jung had this advice about a recurring dream where a figure is chasing you: try to get yourself to stop, turn around, and say, “What do you want? You don’t have to chase me to get my attention. I’m listening.” Sometimes, with help from the group, people who hear voices can do something similar — just as in real life, if someone were chasing you, you might be more likely to stand up to your pursuer if you felt you had support.

Frisch: Is there ever a role for psychiatric drugs in treatment?

Hornstein: Psychiatry is a very politicized field. People who raise questions about drug treatment are often dismissed as knee-jerk critics, and people who see something positive about it are often considered apologists. Both those extremes are wrong. The challenge is to understand medication in a much more complex way, not oversimplifying people’s experiences and cramming them all into one box or another.

I take seriously the people who find drugs helpful. If a person says, “I was unable to get out of bed until I began taking this antidepressant,” I think we should applaud that. The number of people who experience such results, however, is far smaller than drug-company advertisements or ardent proponents of biological psychiatry make it seem.

Personal. Political. Provocative. Subscribe to The Sun and save 55%.

PRINT

E-MAIL

SHARE

PDF

WRITE TO THE EDITOR

SUBSCRIBE