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Interview: NAMI-OC President John S. Leyerle on reducing mental illness stigma


John S. Leyerle, president of the Orange County chapter of the National Alliance on Mental Illness (NAMI-OC), was a guest on the Nov. 13 “In Your Right Mind” radio show about mental illness stigma. We spoke to Leyerle about the stigmatization of mental illness, the impact of stigma on persons with mental illness and their families, and ways to reduce stigma, as well as the challenges in doing so. Leyerle also discusses some of the core elements of NAMI and how they work to reduce the stigma of mental illness.

Question: How does stigma impact people with mental illness and their families?

Answer: Stigma is hurtful, dehumanizing, discriminatory, prejudicial, insensitive and offensive. The stigma of mental illness treats persons with a mental health condition as broken, defective and to be avoided. Stigma creates an optic that persons with a mental health condition have a failure of character or will and may be frightening. It motivates the perception that somehow the family is responsible for their loved one’s mental illness.

Stigma creates an invisible barrier of feelings blocking effective and rational interpersonal relationship building and interaction. Stigma ostracizes people with a mental health condition and their families. The absence of empathy and caring for persons with a mental health condition and their families, and the implication of their reduced self-worth, blocks healing human compassion. Stigma blocks the encouragement to receive care and discourages the hope for wellness and living in recovery.

Q: How do you think the views of mental illness are changing?

A: Positive change is slow but I see reason for hope. In decades past, mental illness was not openly discussed. Conversations about mental illness were limited to clinical settings and sometimes whispers in homes, but rarely in public forums. Now, there are education classes about mental illness given by NAMI and others offered to the public, and people are attending by the thousands every year.

In very recent years, there are mental health care parity laws aimed at providing the same standard of care for mental health — such as not artificially limiting the number of counselor visits for depression treatment — that is provided for physical health — such as not limiting the number of dialysis visits required for kidney treatment. Mental health awareness and conversations are building on high school and college campuses with NAMI On Campus and other programs.

But much work remains to be done — recent Halloween attractions at theme parks around the country designed commercial “entertainment” that demonizes mental health patients on a terrorizing rampage. (See an article in The Orange County Register: “Knott’s closes Halloween attraction ‘Fear VR’ after complaints from mental health advocates.”)

Q: Why is it important to help re-educate the general public, consumers and families about the misconceptions of mental illness?

A: Education builds understanding, and understanding motivates acceptance. When we learn that mental illness is a biological brain disorder that can be treated, leading to wellness in recovery, the fear of the unknown melts away. Then, we find empathy and support for care. In evidence-based teaching curriculum, such as NAMI’s Family-to-Family, 12-week education class, participants learn about the chemistry of the brain, how a mental illness is diagnosed and treated, problem-solving techniques, models for effective communication, self-care and other empowering insights.

Much of this educational information is not intuitive for anyone first exposed to a mental illness condition. Enriched with this knowledge, consumers, families and the public have powerful tools to remove the obstacles of stigma and avoidance, and to apply practical measures for meaningful care and improvement. As the author of Family-to-Family, Dr. Joyce Burland often says, “You can’t be expected to know what no one has ever told you.” The misconceptions of mental illness are common without the knowledge from a competent education program. And with that knowledge, the former misconceptions are replaced with tools for action and paths to living in wellness.

Q: What do you see as the biggest barrier(s) to ending stigma?

A: Stigma is such an obstacle to effective treatment and support for consumers and families in their mental health journeys. Stigma blocks willingness to seek and receive effective care. The antidotes to stigma are awareness, education and understanding. Awareness comes from hearing that there may be some information that could help unlock the “black box” of mental health uncertainty for the consumer, family members and the public.

With awareness comes realization of the need for and benefit from education about mental illness. Education removes the mystery and uncertainty surrounding mental illness. It highlights the objective aspects of mental illness and creates the confidence that each aspect can be addressed with effective tools.

As a part of NAMI’s education programs, exposure to and contact with mental illness further reduces stigma. For instance, in class 10 of Family-to-Family, a person living with a mental illness shares the story of their mental health journey and answers questions from the class members. The class members always listen intently to the story. They express profound appreciation for hearing insightful answers to their questions that they haven’t been able to ask their loved ones with a mental health condition. It feels as though they are receiving answers from their loved ones.

Q: What are some effective ways to combat stigma, and what role does NAMI Orange County play in helping to reduce mental illness stigma in society?

A: A core element of NAMI Orange County’s mission is reducing the stigma of mental illness. It’s a fundamental part of helping families and their loved ones in their mental health journeys. NAMI Orange County reduces stigma throughout the year in many forums large and small. Our annual NAMI Walk that just occurred on Oct. 1 at Mason Regional Park in Irvine had over 1,700 participants. The two goals of the walk are to raise funds for about one-third of our yearly education programs and to publicly reduce stigma. Every year at the walk, consumers, families and the public feel included, supported and a part of community in their mental health journeys.

In smaller education program settings, NAMI reaches two dozen or more consumers, families, high school students, health care professionals and the public through each class and presentation. These programs include stigma reduction awareness, education and understanding. Further, in small group meetings and informal conversations, NAMI Orange County’s volunteers, staff and board members frequently and comfortably discuss mental health information to enlighten and encourage the people we meet.

About John S. Leyerle

John S. Leyerle is president of the Orange County chapter of the National Alliance on Mental Illness (NAMI). He lives with his wife of 42 years, Claudia, in Mission Viejo and has two adult children, Chris and Katy, and six grandchildren. Leyerle received his bachelor’s degree in physics from the University of California, Irvine (UCI), in 1972, and joined the U.S. Coast Guard Reserve after his college graduation.

Leyerle began his mental illness advocacy in 2004 when he attended the Family-to-Family class co-taught by his wife. In 2010, Leyerle completed the Family-to-Family teacher training, and he co-taught his first class with his wife in 2011. Leyerle intends to continue teaching classes in the years to come. He’s found every Family-to-Family class to be an empowerment and resource blessing to each attendee, and a privileged blessing to him.