People react like you’re missing a leg," said one person diagnosed with schizophrenia, speaking of the stigma attached to mental illness. Worse yet, according to Faith Dickerson, Ph.D., director of psychology at the Sheppard Pratt Health System in Baltimore, mentally ill persons are labeled "crazy," told their illness is their fault, and fear telling even family and friends about their conditions because of the negative reactions that might ensue.
"Stigma has its fingerprints all over the system," said U. S. Surgeon General David Satcher, M.D., Ph.D., at the conference "Spring to Action: A National Mental Health Symposium to Address Discrimination and Stigma" sponsored by the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration in March in Baltimore. Stigma affects "not only individuals, families, communities, and health professionals, but the system itself. Stigma leads to discrimination within the health system by affecting the way we pay for, manage, and coordinate services. Despite spending $1.3 trillion on health care, we have so many people left out.
"Mental illness is real and can’t be separated from other physical disorders," Satcher continued. "The good news is that psychiatrists [can successfully treat] 80 percent to 90 percent of patients. . . .The bad news is that while one in five Americans suffers from mental illness, only half of them ever seek treatment."
Much of this avoidance, he suggested, derives from the pervasive effects of the stigma attached to mental illness and those suffering from it.
"When people understand that mental disorders are not the result of moral failings or limited willpower but are legitimate illnesses that are responsive to specific treatments, much of the negative stereotyping may dissipate," said Satcher, reiterating ideas presented in his office’s landmark report on mental health in the United States (Psychiatric News, January 7, 2000).
Stigma can be defined as a mark of shame, disgrace, or disapproval that results in an individual’s being shunned or rejected by others, according to the World Health Organization, which devoted its World Health Day in April to mental health (see page 11). Dickerson’s survey of longtime patients with schizophrenia or seasonal affective disorder indicated that the experience of stigma was widespread and not associated with symptom severity or personal characteristics.
"Stigma affects the lives of mentally ill persons in many ways," said Bruce Link, Ph.D., a professor of public health at Columbia University. "Direct discrimination by other people’s behavior and consequential self-stigmatization are not the only effects. Within the health care system, structural discrimination influences more than the individual. Less money is spent on research and care. Those with mental illness get less care than a heart patient, even in similar personal circumstances."
The effects of stigma are particularly burdensome on children, said Satcher. Parents often have difficulty admitting that their children need help and so miss opportunities for treatment. "The result is that many kids end up underachieving, on the streets, or in the criminal justice system," he said, imposing yet another burden on society.
Stigma affects mentally ill persons from two directions, said Patrick Corrigan, Psy.D., an associate professor of psychiatry at the University of Chicago. "The public aspect of stigma begins with a stereotype, a negative belief about a group. Agreement with this belief becomes a prejudice, which is expressed as behavior in discrimination."
But stigma can corrode from the inside out, as well, said Corrigan. In that case, the stereotype becomes a negative belief about oneself. Prejudice is expressed as agreement with the stereotype, resulting in low self-esteem. The consequential discrimination is a failure to function in the world, say, by not going to work.
In a study of public attitudes, Corrigan sought to test three ways of combating stigma: protest, education, and contact. Among his 152 subjects, protest—moral indignation and shame—was the least effective method. Better was education: trying to explain the realities of dangerousness and responsibility among mentally ill persons.
"If people can hold the group responsible for their condition, they feel anger," said Corrigan. "But if not, they feel pity and want to help."
Face-to-face contact between mentally ill individuals and the test subjects produced the best results. Corrigan even gave his subjects $20, which he suggested they could pocket or donate to the National Alliance for the Mentally Ill, after the study was completed. The contact group donated the largest percentage, presumably because they felt so kindly disposed toward people with mentally illness.
He also noted, however, that stigma had to be confronted within the profession: "If contact is so good, then why do mental health and emergency room providers maintain stereotypes?"
Too often, language is used to equate the person with the illness and to express stereotypes, said David Penn, Ph.D., an assistant professor of psychology at the University of North Carolina, Chapel Hill. He examined labels applied to people with mental illness to see whether politically correct terminology might reduce stigma. Checking through professional literature, Penn chose three "politically correct" (PC) labels: "consumer of mental health services," "person with schizophrenia," and "person with severe mental illness." His non-PC choice was "schizophrenic."
His test subjects (113 college students and 77 community members) were asked to rate the target individuals according to their labels. There was no statistical difference between the two subject groups.
The highest negative reaction was for "schizophrenic," he found, but the subjects assigned more blame to "consumers." "Consumers" were also associated with greater responsibility for their illness but also for a greater ability to change their status. Overall, Penn said, PC labels did not differ much in their impact on subject behavior, as expressed by measures of social distance, affective reaction, dangerousness, or blame.
"PC labels seemed to be associated with less stigma," he said, "but such labels are ambiguous and may or may not be a good thing."
Penn also said that the mass media have served as an indirect contact with mentally ill persons. While they have been powerful enough to stigmatize them, they might also help change attitudes (see page 10).
Public views of people with mental illness have fluctuated over the last half century, according to Columbia’s Link. "In the 1950s, mental illness was a fearful thing. By the 1980s, one researcher would claim that stigma was transitory and not a severe problem," he said.
Today, 90 percent of the 1,444 people Link surveyed believe that those with mental illnesses can improve with outside help, though 61 percent of respondents associated schizophrenia with violence, a figure far out of line with reality, he said.
Research shows that stigma, while pervasive, may be amenable to change. Satcher said that professionals working in the mental health field could make a start by educating themselves on the effect that stigma has on the lives of individuals with mental illness and on their families. They also needed to continue efforts to mobilize policymakers and to move the media toward more accurate portrayals of mental illness.
"Psychiatrists and others need to motivate patients to stick with their treatments, taking more time to talk with their families," he said. "We have to admit our limitations and face the fact that treatment is often a trial-and-error process. If one drug or treatment doesn’t work, we have to try another." ▪