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People with mental health conditions face not only distress and disease, but also stigma: the prejudice and discrimination that get attached to health conditions. Stigma has long been a barrier for people accessing the care and resources they need to recover, and a foe of mental health care advocates. But in some ways, the battle against stigma may be changing: A recent study published in JAMA Network Open found the first evidence of significant decreases in public stigma in the United States toward depression. It’s a promising sign that campaigns against stigma—a concept first identified in the mid–20th century—can work.
As part of the study, which was carried out in 1996, 2006, and 2018, participants (different ones each year) were given vignettes about people experiencing schizophrenia, depression, alcohol dependence, and daily troubles, and then responded to a survey with their beliefs about underlying causes for those afflictions, perceptions of sufferers’ potential to commit violent acts, and desire for social distance from them.
Participants were then asked questions, including how willing they would be to work closely with the person described in the vignette on a job, live next door to a group home for people with mental health needs, spend an evening socializing with the person, marry into their family, and have them as a friend. From 2006 to 2018, the desire for social distance related to depression decreased in every venue including work (from 47 percent in 2006 to 29 percent in 2018), socialization (from 30 percent to 15 percent), friendship (from 21 percent to 11 percent), family marriage (from 53 percent to 40 percent), and group homes (from 36 percent to 25 percent).
But stigma overall remained at the same level for alcohol dependence (and for daily troubles, which constituted the control group) and has increased for schizophrenia in some domains. For instance, the study also asked participants about whether they thought people with schizophrenia were likely to be violent; that number rose from 54 percent in 1996 to 67 percent in 2018.
It’s an imperfect way to measure stigma, but it’s the best that’s out there. “I think it’s a big finding,” said Stephen Hinshaw, distinguished professor of psychology at the University of California–Berkeley, adding that it’s the first time a study has shown substantially reduced public stigma toward depression. “The big question is, do attitudes lead into behavior change? We hope so, but it’s an unknown.”
Today, we think of stigma as a form of prejudice or discrimination that can get attached to any health condition. Stigma isolates people, makes them less likely to seek help when they need it, and is associated with experiencing poorer recovery from mental illness years later.
Stigma of mental health conditions has been around for centuries. For instance, during ancient times, many cultures viewed mental illness as a religious or personal problem. People with cognitive differences were treated as slaves or criminals, and in some ways, stigma was a brand to mark slaves or criminals. During the Middle Ages, people with mental disorders were similarly believed to be possessed or in need of religion. Through the 18th and 19th centuries, some people with severe mental illness were locked away in places like the famous Bedlam Hospital, where they were exposed to neglectful and deplorable conditions. During an undercover assignment at Women’s Lunatic Asylum in New York, muckraking journalist Nellie Bly encountered spoiled food, undrinkable water, and rats; she also wrote that patients who were considered dangerous were tied together with ropes, and that nurses told patients to shut up and beat them if they did not listen.
One of the first serious efforts at mental health advocacy came when activist Dorothea Dix lobbied for better living conditions for people with mental illnesses, which eventually led to the creation of state psychiatric hospitals (often referred to as asylums) in the 1920s in the U.S. At the time, the idea of the asylum was progressive, but there wasn’t enough money for mental health treatment. Asylums then became places where there were insufficient staff and resources. Advocacy groups created the community mental health movement around the 1960s with the goal of shutting down the large asylums and establishing community-based care, where patients were treated in community settings rather than the more-secluded asylums. Several psychiatric medications, such as lithium and chlorpromazine (the latter of which is now marketed under the brand names Thorazine and Largactil), were developed and first used in the mid–20th century.
As these largely positive changes were happening, however, stigma toward people with mental illness living in the community did not decrease. Individuals and their families faced prejudice and discrimination.
It was around this time that sociologist Erving Goffman popularized the idea of stigma around mental illness with his book Stigma: Notes on the Management of Spoiled Identity. Goffman believed psychiatric hospitals increased stigma against people with a mental illness, since they didn’t enable people to lead normal lives.
Around the same time, a new, related idea was emerging. Thomas Scheff, now a professor emeritus in the Department of Sociology at University of California–Santa Barbara, created “labeling theory”: the idea that mental illness was not necessarily something people intrinsically had but was instead directly produced or influenced by the very act of being labeled, akin to a self-fulfilling prophecy or stereotype.
The concept of stigma finally started to develop empirically in the 1970s, including through the work of critics of labeling theory. Later, Bruce Link, a research scientist at New York State Psychiatric Institute and lecturer at Columbia University, expanded on Scheff’s idea by defining the steps through which someone adopts the role of a person with a mental illness. How does this relate to stigma? Basically, Link believed that mental illnesses are more than labels, but even if a label does not directly produce a mental health condition, it can still lead to negative outcomes.
These early concepts of stigma were criticized for being too vague and individually focused rather than holistic. But in the years that followed, definitions of stigma expanded to include stereotyping, separation of “us” from “them,” status loss, and discrimination. Contemporary stigma researchers also argued that stigma was a product of how the field of psychiatry was organized.
Major mental health education campaigns, although not specifically designed to be anti-stigma, were eventually launched in the late 20th and early 21st centuries. Yet people still stigmatized others with mental illnesses, thanks in part to portrayals in the media of people with serious mental illnesses as violent or dangerous. So around the late 1990s, advocates began to address the dangers of stigma specifically around by creating campaigns, especially TV commercials, that showed effective treatments for depression. The idea was that people would be more willing to disclose their mental health problems, especially to their doctors, if they believed they could get help. Similar efforts addressing schizophrenia, for instance, have lagged. Only recently have the first commercials been released.
Bernice Pescosolido, lead author of the recent study and a distinguished professor of sociology at Indiana University, thinks that one reason we’ve been successful for reducing public stigma toward depression—compared with other conditions like schizophrenia—is because depression is so much more common.
“We haven’t overcome the problem yet”—but nevertheless, “whatever we’re doing in the field of depression is working.” said Heather Stuart, professor in the Department of Public Health Sciences and the Department of Psychiatry and Rehabilitation Therapy at Queen’s University, who was not involved in the recent study.
One of the current debates about stigma is where advocates are focusing their efforts—and where they should be. To date, arguably most of the focus of mental health advocacy has been on addressing self-stigma (feelings of worthlessness, self-esteem, and withdrawal from opportunities) and public stigma (social relationships, as discussed by Pescosolido’s study). But now there’s a new kind of stigma getting attention from researchers and advocates: structural stigma, or institutional stigma, which Pescosolido describes as “policies and laws that separate people as different.” Efforts to address such stigma are challenging, as they fundamentally involve changing organizations that embed stigma in their practices and may further contribute to systemic inequities.
For instance, when Pescosolido applied for Transportation Security Administration PreCheck, she was asked to disclose whether she had spent even a night in a hospital for a mental illness. The TSA PreCheck application still includes the following question: “Within the past 7 years, has a court, board, commission, or other government authority determined that you, as a result of mental illness, pose a danger to yourself or to others, or that you lack the capacity to conduct or manage your own affairs or have you been involuntarily committed to an inpatient facility for mental health or psychiatric reasons?” Based on the TSA’s website, answering yes to this question will disqualify someone from PreCheck.
“Even in the smallest ways, we have to understand how organizations embed messages and stigmatize people who are different,” Pescosolido said.
Another example of structural stigma is the fact that mental health research and services are significantly underfunded or not reimbursed to the same level as other forms of research and health services are. But some mental health advocates argue that we may be overly focused on fighting stigma rather than focusing on the real battles of addressing underlying social determinants of mental health, such as increasing access to affordable housing, health care facilities, behavioral health providers, rehabilitation programs, and transportation.
But it’s also possible to fight stigma on every level, instead of focusing on just one. Broadly, stigma is a consequence of not understanding a disease at a scientific level. Even tuberculosis and cancer were stigmatized before the causes were understood. At its core, then, fighting stigma is about helping people understand what an illness—mental or physical—is and is not. For instance, mental health conditions including schizophrenia are often wrongly associated with violence and fear. As Charles Stromeyer IV, a member of the consumer advisory board of the Massachusetts Mental Health Center Public Psychiatry Division of the Beth Israel Deaconess Medical Center, notes that in reality, people with a mental illness are more likely to be victims rather than perpetrators of violence. Rates of violent crime would still be at 96 percent of current rates if you took out people with mental health conditions.
Experts say that in addition to education—for instance, many people don’t realize that with advancements in modern treatments, many people can recover from a mental illness, whether it’s depression, schizophrenia, or bipolar disorder—combating stigma requires empathy. As Pescosolido says, a mental health condition is “like any other.” Advocates have been successful in changing breast cancer, once stigmatized, into an illness that people talk about openly. With science, advocacy, evidence-based interventions, and empathy, the same can happen—and in some respects, is already happening—for mental health conditions.