To Move Beyond Stigma, We First Need to Understand It

NAMI On Campus group promotes mental health awareness in order to help end stigma.

I know what stigma is, rather, I know what stigma feels like: shameful, isolated, lonely, scary and uncertain. We all have some understanding of stigma. As mental health advocates, we work to dismantle the negative feelings surrounding mental illness by offering facts and experiences that we hope will foster understanding.

At Indiana University in Bloomington, Indiana, Distinguished Professor of Sociology, Dr. Bernice Pescosolido, has spent her career studying stigma related to mental illnesses. She was recently awarded the 2015 Distinguished Investigator Grant from The Brain & Behavior Research Foundation to further explore the topic. Dr. Pescosolido will reinvent and repeat the largest U.S. survey done on mental illness stigma. The original study, which was initiated by Dr. Pescosolido in 1996 and replicated a decade later, found that prejudice remained even as people became more accepting of mental illnesses as neurobiological brain conditions.

The 1996 study was the first broad study on stigma in 50 years. In that time, the 1996 study found that people had broadened their view of mental illness to include non-psychotic conditions. Paradoxically, that half-century also brought on a greater number of people defining mental illness in terms of violent or ‘frightening’ behaviors.

The 1996 study also found that nearly half of Americans felt that the government should be spending more money on mental health services.  Only 1 out of 10 people felt there should be less spending. Since that time, NAMI has found that states have been significantly cutting spending on mental health services. In the most recent report, State Mental Health Legislation: Trends, Themes and Effective Practices, NAMI pointed out that funding decreased in more states than it grew.

In 2006, this study was recreated to get a sense of whether or not anti-stigma efforts were working. The results again showed that people were continuing to understand the biological basis and moving away from the past ideas of moral failing and personal blame. Yet again, the stigma remained. The 2006 study found no significant change in stigma. Slightly more than half of those surveyed said they would be unwilling to socialize with a person living with mental illness.

This latest survey is scheduled to be conducted in 2018 and will be Dr. Pescosolido’s third evaluation of how society views people living with mental illnesses, in hopes to identify a direction forward for anti-stigma efforts.

“I feel like it’s a duty. We need to keep our finger on the pulse of prejudice and discrimination so we know how to fight it,” said Dr. Pescosolido about her work around stigma.

Now comes the dictionary definition. According to dictionary.com stigma is, “a mark of disgrace or infamy; a stain or reproach, as on one’s reputation.” For Dr. Pescosolido, stigma is considered a mark placed on a person or group that separates them from other people. Those with the mark experience prejudice and discrimination.

The move to de-stigmatize mental illness is not new. NAMI and others have been working for a long time to spread awareness and start conversations about how mental illnesses are treatable and people can live meaningful lives while managing their illness. Despite these efforts, stigma persists.

In her article, ‘The Stigma Complex,’ published in The Annual Review of Sociology 2015, Dr. Pescosolido describes the limits of education and improving knowledge as a way to destigmatize mental illnesses. “Americans get it,” says Dr. Pescosolido, “that it is a brain disorder…but we saw no change in stigma.” A 2013 global study done by Dr. Pescosolido, shows that nearly 75% of those in the US would not want an in-law who is living with a mental illness.

“Society doesn’t change quickly, but I think it is important to stay the course,” says Dr. Pescosolido. “If you want to reduce stigma on a large scale, you really have to know what is stigmatizing.”

There is some good news: anecdotal evidence that stigma may be less prevalent in younger generations. Over the decades that Dr. Pescosolido has been a professor, she has noticed a change in her students’ attitudes about and willingness to discuss mental illness. While her students in the 1980s would wait until after lecture to privately discuss a family member’s diagnosis, she notices that her students today are more open and will discuss mental illness diagnoses during class. Dr. Pescosolido feels that this phenomenon will be reflected in her updated study on stigma.

“They didn’t grow up in the era of asylums,” says Dr. Pescosolido of her current students. “This generation sees themselves as very powerful.” Dr. Pescosolido says her students are much more willing to talk to their friends and family about mental illness.

Once completed, Dr. Pescosolido’s study will be the first update on the prevalence of stigma in 22 years. Dr. Pescosolido hopes to revisit the study every decade to measure its hopeful decline.

You can be a part of positive change by pledging to be stigmafree, and by spreading the word about important stigma-busting resources including ok2talk.org and notalone.nami.com.