Cut the Stigma

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Cut the Stigma

By Jeanene Swanson 12/16/14

“The shame and secrecy that shroud this disease are just as deadly as the disease itself.” - Kristen Johnston

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Disease comes with stigma, there’s no denying that. In the 1950s, if you got “The Cancer,” you told no one outside your immediate family. HIV has lost some of its stigma since the 1980s—thanks to tireless advocacy work on behalf of those most affected by it. However, in Africa, it still carries burden. Ebola in West Africa has brought out some of the worst ,and best, in people. So, it’s not surprising that today mental health disorders, including addiction, carry stigma before, during, and after recovery.

Coming out as mentally ill or addicted is the number one thing that’s going to change people’s perceptions.

“The shame and secrecy that shroud this disease are just as deadly as the disease itself,” says actress Kristen Johnston in the movie, The Anonymous People, which documents the history of the treatment—and lack thereof—of mental health and addiction disorders in the United States. While there are a number of diseases that are stigmatized—AIDS, STDs, and certain skin diseases, like leprosy, to name a few—mental health and addiction disorders probably carry the most severe prejudice and discrimination. Despite advances in our understanding of the biological underpinnings of these afflictions as well as advocacy work that dates back 80 years, the stigma against mental health and substance use disorders seems to be getting worse.

Leading stigma researcher, Dr. Bernice Pescosolido, a sociology professor at Indiana University and the director of the Indiana Consortium for Mental Health Services Research, posed a web-based survey to 700 people across the country and found that they held “significantly more negative views toward persons with drug addiction” than mental illness. When asked about their attitudes toward stigma, discrimination, and treatment effectiveness regarding mental health and addiction disorders, “more respondents were unwilling to have a person with drug addiction marry into their family or work closely with them.” Additionally, they were “more willing to accept discriminatory practices against persons with drug addiction, more skeptical about the effectiveness of treatments, and more likely to oppose policies aimed at helping them.” The paper came out in October of this year. Apparently, stigma is still very much alive and well.

Stigma, says Dr. Patrick Corrigan, leads to prejudice—holding negative beliefs about a group—and discrimination—creating policies that unfairly target this specific group. “It’s a baseless stereotype, like all people who do drugs are morally bankrupt [and] dangerous,” he says. “I’m not going to hire them, rent to them, or let them be associated with my family.”  Corrigan, who teaches psychology at the Illinois Institute of Technology and heads the National Consortium on Stigma and Empowerment, conducted a study in 2009 that found that among 815 people asked to read a story about someone with a mental health disorder, addiction, or a physical handicap, those surveyed viewed addicts as more blameworthy and dangerous than those with mental health problems.

Stigma against addicts exists because it is commonly believed that they are making bad choices, and that they have control over their actions. While this is essentially true—no one is forcing you to drink or use—there are fundamental changes in not only reward, but also executive control areas in the brain that make it hard to do what some consider a simple cost-benefit analysis before imbibing. And many addicts began using as a way to cope—unfortunately, getting high to self-soothe comes with the risk of addiction. “Addiction is so complex, and also so devastating, that many societies have ostracized and shamed people with addictive disorders,” Dr. Richard Juman notes. Juman is a psychologist, former president of the New York State Psychological Association, and a member of its Addiction Division Executive Committee. “It’s easy to do that because the behavioral component—using something that is not working in one’s best interest—is poorly understood and thus easy to criticize.”

People with substance use disorders are also viewed as dangerous, says Dr. Jamie Livingston, who teaches sociology at Saint Mary’s University in Nova Scotia and who has studied ways to reduce stigma. “Moreover, using substances is related to dangerous behavior, including driving while impaired or using substances while pregnant.”

The media plays a role in keeping addicts down, too. Stories of recovery are almost never broadcast in favor of sordid, “train crash” vignettes that feed into our voyeuristic nature—as well as the “there but for the grace of God go I” fear that none of us are truly safe from becoming addicted. “For mental illness, the stigma has gotten worse and probably because the way the media represents them,” Corrigan says. “I can only imagine the stigma toward addicts is getting worse.”

Stigma—where does it come from?

Three forms of social stigma are physical deformity, mental illness, and race or ethnicity. Stigma generally serves to either protect culture—confer advantage to in-groups, or those who hold power in a society—or protect health—ward off diseases that might harm some or all the members of a community. In fact, some claim that stigma is an ancient part of human societies and that it’s probably evolutionary in that it serves an adaptive purpose to our species. While there are benefits to being able to quickly identify one group from another, especially if they are carrying marks of disease, “the problem is those kind of categorizations have morphed into in-group/out-group categorizations,” Corrigan says. “The one most available is race, and it always translates into one is better than the other.”

When it comes to disease, creating an out-group seems essential to protecting the healthy members of society. However, as seen even as recently as this past October during the Ebola outbreak in West Africa, when healthy Liberians in New York were being discriminated against; stigma against disease simply fortifies an already existing “us versus them” xenophobia. “Strikingly, in nearly every stage of history in reference to almost every major disease outbreak, one stigmatizing theme is constant: disease outbreaks are blamed on a 'low' or 'immoral' class of people who must be quarantined and removed as a threat to society,” writes Harvard University’s Sara Gorman at PLoS Blogs. “These 'low' and 'immoral'  people are often identified as outsiders, on the fringes of society, including foreigners, immigrants, racial minorities, and people of low socioeconomic status. Disease stigma can be viewed as a proxy for other types of fears, especially xenophobia and general fear of outsiders.” 

Corrigan believes stereotypes are unavoidable. However, acting on prejudices—or actively discriminating against someone—can be educated and legislated against. In a paper co-authored by Columbia University’s Dr. Bruce Link and Dr. Jo Phelan, they argued that a concept of stigma can only exist within a power structure that attempts to discriminate against those labeled as “bad” or “less than." This is particularly relevant for populations that are underserved, in the healthcare system, based on race, socioeconomic class, and mental illness.

How does stigma affect addicts?

Stigma keeps people down, in, or away, according to a more recent 2008 paper co-authored by Columbia’s Phelan. Stigma takes away people’s rights. “For instance, having a history of substance use problems may be used to deny housing or employment opportunities to someone,” Livingston says. “This also manifests in substance use services being systematically deprioritized in the allocation of healthcare funding, which results in people having access to substandard care that doesn’t meet their needs.”

Stigma on an individual level, or self-stigma, is part of what comprises substance use disorders—people feel hopeless, worthless, and ashamed, or they perpetuate these feelings by using drugs as a way to cope or “escape.”

One of the biggest negative effects of stigma is the fear of speaking out—both getting help and talking about your recovery. “Stigma may be the most damaging aspect of addiction because it impacts you both while you are in the deepest throes of substance misuse as well as long after recovery has been established,” Juman says. “It causes active users to avoid treatment and risk incarceration; it continues to work against people later on when it comes to employment, housing, and many other key aspects of a healthy life.”

A grassroots advocacy movement is growing up all over the US under the auspices of a group called Faces & Voices of Recovery. Its aim is to combat the shame and secrecy that goes along with addiction and promote public policy changes toward improving treatment.

How to erase the stigma of addiction

Even though people increasingly know that genetics play a relevant role in both mental health problems and addiction—some would argue that we know more than ever before about the biological underpinnings of addiction—it’s causing people to show less empathy. Some studies have shown that when people know that mental disorders have a genetic basis, it causes them to increase their distance, believe sufferers to be dangerous, and blame the entire family. It’s not news that medical professionals stigmatize mentally ill, and especially, addicted patients. One very recent study out of Yale University found that clinicians showed less empathy and compassion for the patient when his or her symptoms were based on biological explanations. 

How to change this lack of empathy then? One way to reduce stigma is to shed the language surrounding addiction. Many terms used to address addicts are negative or pejorative—even calling addicted people “addicts” is stigmatizing. “It’s like, we use these negative, derogative, stigmatizing, shaming terms about ourselves and each other and we view them as terms of endearment in the rooms [of 12-step meetings], but when you use them outside, it means something different,” says Richard Buckman, who is on the board of directors and staff of Faces & Voices of Recovery.

The anonymity cherished by 12-step members could also contribute to continuing shame and secrecy about their addictions. Discouraging anonymity is key to educating the public about addiction—and that people can overcome substance use disorders to become some of the most productive and enlightened members of society. “Education about illness as a treatable problem [is key], especially by highlighting the contributions of the many ​people who are in recovery,” Juman says. “Interestingly, the anonymity aspect of addiction recovery may work to reinforce stigma.”

Advocacy groups are forming—namely, the movement Faces & Voices of Recovery, of which its members were featured in The Anonymous People. “Our goal is to organize and mobilize folks into local recovery community organizations, and try to build some infrastructure to create a nationwide voice that advocates for people in recovery, in need of help from addiction, and also for family members,” Buckman says. The organization currently has 100 members—grassroots advocacy organizations, recovery centers, and the like—across 33 states.

Buckman encourages everyone to watch The Anonymous People. “The movie has really taken that message to a much broader audience across the country and across the world—how addiction is still treated differently than other illnesses,” he says. “The difference is there is a level of compassion and understanding that exists with mental illness that doesn’t exist with addiction. There is some level of acceptance with addiction, but compassion is not present.”

Health insurance now covers treatment for addiction, though to what level of effectiveness remains to be seen. While the 1996 Mental Health Parity Act, followed by the 2008 Mental Health Parity and Addiction Equity Act, required insurance companies to cover treatment for mental health and substance use disorders, addicts often got substandard care. Congress passed the Affordable Care Act this year, and in essence, it will not only offer coverage for substance use disorders, but offer the possibility of coverage to those who most need it: people living in poverty who are more often both addicted and unable to access insurance. Corrigan believes “ACA is a gift from God—it’s going to go down in history.”

Corrigan thinks coming out as mentally ill or addicted is the number one thing that’s going to change people’s perceptions of this population—much like the Gay Rights Movement did for gays and lesbians. “The stigma of LGBT has come a long way, and the reason is not because the kids learned it was all genetics, it’s because real people—friends [and family]—are out,” he says. “So we would expect the same thing for mental illness.”

Jeanene Swanson is a regular contributor to The Fix. She last wrote about substituting addictions and addiction among Hispanics.

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Jeanene Swanson is a science journalist who specializes in mental health and addiction. As a science writer with a background in biotechnology, she enjoys turning complex subjects into stories that everyone can understand—and apply to their lives. You can find Jeanene on Linkedin.

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