Fighting against the stigma of mental illness and advocating for parity
Moments after delivering her first child, a baby girl, Kate sensed that something wasn’t right. Not with the baby, but with herself. “I really wanted nothing to do with my daughter after she was born. I didn’t have that motherly touch.” Kate was a mother, but she couldn’t feel like a mother. She couldn’t love. “My anxiety was horrific,” says Kate, who asked that her last name not be used for privacy. “I was already drinking a glass of wine immediately after she was born.”
Kate was soon diagnosed with postpartum depression and, later, with bipolar disorder. But, like many people with mental health disorders, the stigma toward what she was feeling was as debilitating as the illness itself. The negative stigma weighed on her and made it harder to cope.
Kate vividly recalls a family gathering in which her uncle told her “postpartum depression doesn’t even exist. Women made that up because they’re too weak to handle being a mother.”
Comments like these represent a pervasive view of mental illness shaped mostly by those who don’t experience mental illness themselves. Pejorative terms trivialize mental illness. From a young age, children will call others “psycho” or “nuts.” Prescription medications are referred to as “crazy pills.” Media stories will portray violent perpetrators as “mentally ill” with little context, propelling a narrative that misinforms our society and our healthcare system.
Shaming people into silence
Dismissive and hurtful comments make it harder for people to seek treatment for mental health issues. We talk about physical health problems like breast cancer, but less so about disorders of the mind. Stigma shames people into silence for fear of being judged or disparaged. And until that stigma is removed, people will continue to suffer and not seek help.
It’s no coincidence that people with mental health disorders are much less likely to find employment, adequate housing or maintain long-term relationships.
“The stigma of mental illness is in the same category as racism, sexism and ageism. It’s prejudice and discrimination against a group,” says Patrick Corrigan, professor of psychology at Illinois Institute of Technology and principal investigator of the National Consortium on Stigma and Empowerment.
This stigma, along with other social and institutional barriers, prevents people from getting the care they need. Nearly 60 percent of adults with mental illness do not receive mental health services, according to the National Alliance on Mental Illness (NAMI).
Parity for mental health care
Negative attitudes toward mental health directly manifest in the lack of adequate health coverage and resources available. In 2008, Congress passed the Mental Health Parity and Addiction Equity Act prohibiting health insurers and group health plans from imposing stricter coverage limits for mental health and addiction treatment than for physical medical conditions. In 2014, the Affordable Care Act further expanded the requirements.
However, the law and its enforcement have not been effective, and these disparities are still as stark as ever. People living with mental illness routinely encounter obstacles in insurance coverage of mental health services.
“The physical health protections in insurance to cover for inpatient stays and outpatient care is far greater than for mental health issues,” Corrigan says.
- In-network mental health providers are hard to find. Out-of-network providers have higher costs and often require full payment upfront.
- Intensive residential treatment facilities for mental health are usually not covered.
- Out-of-pocket costs are barriers to outpatient and inpatient mental health care.
- Patients are denied coverage for mental health care at a rate that’s double than that for other medical services, according to NAMI.
- The ongoing cost of prescription psychiatric medications — especially brand-name medications — is often an obstacle for patients.
“It’s incredibly unfair that the type of therapies and supports that a patient discovers are crucial to their healing and recovery may not be covered,” says Sue McKenzie, program director for Rogers InHealth, a division of Rogers Behavioral Health. “Everything is between the insurance companies and the drug companies, and patients get left out.”
The downward spiral
When patients feel stigmatized and face obstacles to care, they often self-medicate. Kate turned to drinking to cope with her depression. She rode a downward spiral, passing out at bars and losing her marriage.
Kate eventually entered inpatient withdrawal management at Rogers Behavioral Health for four days and then moved on to Rogers’ 30-day residential treatment program at Herrington Recovery Center for her mental health and substance use disorders. She almost didn’t make it the full stay — but not because she wasn’t progressing or wasn’t being a great patient.
“My insurance cut off after two weeks,” she says. “It’s scary that insurances aren’t reevaluating the significant importance that a rehab care center really has on people. What’s the percentage of relapse for those people who are in there for two weeks and all of the sudden get the message that their insurance has cut off?”
Kate was fortunate that her doctors had nominated her to receive aid from the Rogers Memorial Hospital Foundation to cover the remainder of her stay. Not all people are this lucky.
“I felt very supported. I didn’t feel judged,” Kate says. “That stigma stuck with me in the outside world when I wasn’t getting help. But being at Herrington was a non-judgmental atmosphere.”
Rogers is not alone in the fight to break down barriers of stigma. Organizations like the National Consortium on Stigma and Empowerment and the Kennedy Forum in Illinois, which advocates for better laws and policies for mental health, are helping to change the conversation.
Ultimately, it takes the courage of someone like Kate to tell her story and be a voice for mental health. Though a lot often stands in the way of someone feeling better — stigma, insurance, financial constraints — Kate is adamant that pursuing better treatment is worth it: “You can’t put a price on mental health,” she says.
Looking for Support or Want to Learn More?
Depression and Bipolar Support Alliance—Greater Chicago. A local chapter of DBSA, which has its national headquarters in Chicago. This peer-directed self-help organization offers support and education to those with mood disorders, their families and friends.
Honest, Open, Proud. HOP is a three-session group program with the objective of reducing the self-stigma associated with mental illness.
The Kennedy Forum. The Kennedy Forum is focused on advancing the current ideas, policies and programming in behavioral health that are known to be effective, while shining a light on solutions of the future.
Mental Health America of Illinois. MHAI is dedicated to promoting mental health, working for the prevention of mental illnesses and improving care and treatment for persons suffering from mental and emotional disorders.
National Alliance on Mental Illness. NAMI is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
National Consortium on Stigma and Empowerment. NCSE is a research group that promotes recovery by understanding stigma and promoting empowerment.
Thresholds. Thresholds provides healthcare, housing and hope for thousands of individuals with mental illnesses and substance use disorders in Illinois each year. Through care, employment, advocacy and housing, Thresholds assists and inspires people with mental illnesses to reclaim their lives.
Originally published in Fall 2018/Winter 2019 issue of Chicago Health
Erin O’Donnell is a freelance health and science writer, parent, and graduate of Northwestern’s Medill School of Journalism. Walks by Lake Michigan make her happy.