Updated March 26 at 6:25pm

Brain Week Rhode Island events strive to destigmatize mental illness

Eliminating the stigma for those who live with mental illness was the focus of two Brain Week Rhode Island events last week.

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Brain Week Rhode Island events strive to destigmatize mental illness

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PROVIDENCE – Eliminating the stigma for those who live with mental illness was the focus of two Brain Week Rhode Island events last week. Brain Week Rhode Island, which celebrates the wonders of the brain and promotes brain research in the state, offered a wide array of free, family-friendly, brain-themed events in Providence and South Kingstown, as part of International Brain Awareness Week. Organized by Cure Alliance for Mental Illness, Brain Week Rhode Island 2017 received major support from the Brown University Institute for Brain Science and the George & Anne Ryan Institute for Neuroscience at the University of Rhode Island.

Describing her childhood as “the real-life Brady Bunch,” Cindy Elder, executive director, National Alliance on Mental Illness of Rhode Island, explained that her widowed mother – whose husband had died of cancer a few years earlier – later married a man whose wife’s depression led to her death. “I grew up in a family that was reeling from both cancer and mental illness,” said Elder. “People now talk about [cancer], but it’s still pretty difficult for most people to talk about mental illness … until we start doing it, we’re never going to change anything.”

Calling those individuals who attended “Moving Mental Illness Out of the Shadows,” the March 13 event at NAMI of Rhode Island, “the courageous types who are willing to begin having the conversation,” Elder added that, with the prevalence of mental illness, silence around the issue is remarkable. “One in five adults in America experience a mental illness … and no one talks about it … [they] can’t say it at work, at school or at home.”

It’s very problematic and troubling when the media uses words such as “unstable,” “unhinged,” “nuts,” “crazy” or “dangerous” to describe President Donald Trump – whom Elder did not identify by name or by office. Many people living with mental illness are extremely courageous, especially those who seek a diagnosis and treatment, and we know that more people living with mental illness are victims, rather than perpetrators, of crimes, said Elder.

NAMI of Rhode Island, a grassroots organization organized in 1983 and affiliated with the national NAMI, provides education, advocacy and support for individuals with mental illness and their family members. With a lean staff and a cohort of volunteers, it has served more than 5,000 individuals since July 2016. Its services include a family-to-family education program, a peer-to-peer recovery education program, a support group for those living with a mental illness and a family support group, and presentations targeted for high school and/or college students, middle and high school students, parents and teachers, and faith-based communities. A program for military families will soon be offered.

After two individuals affiliated with NAMI of Rhode Island shared their stories of struggling with mental illness and their paths to recovery, Elder said, “The act of telling one’s story is a powerful tool; unfortunately, we can’t wait for other people to change the conversation. I have found a way … to tell my story that doesn’t trigger me in a negative way, but tells the key points of my story and allows others to share [theirs]. How will you tell your story? This is how we begin to change the conversation.”

The kickoff for Brain Week Rhode Island was Elyn Saks’ presentation, “Making Peace with Mental Illness,” on Sunday, March 12, on the Brown University campus. Saks is Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould Law School, and author of several books, including her memoir, “The Center Cannot Hold: My Journey through Madness.”

Saks, who used funds from her MacArthur Fellowship (colloquially known as the “genius grant”) to establish the Saks Institute for Mental Health Law, Policy, and Ethics, despaired of the stigma many individuals with mental illness face. Affirming that referring to individuals like her as “people with schizophrenia” and not as “schizophrenics” is more than semantics, she said. “Wise psychiatric treatment has kept me alive … our hope for a cure lies in research.”

People who struggle with mental illness aren’t just “walking systems that can be cured with a pill”; they’re people who live in social and relational contexts, said Saks. “We need to understand people in the richness and fullness of their lives.” Saks’ analyst, whom Saks saw during her time studying as a Marshall Scholar at Oxford University, helped “dispense the shame I had with my thoughts … having someone listen, not judge and not threaten to put me in the hospital or call the police [was immensely important],” said Saks, who intermittently quoted from her memoir. “Shame is a powerful component in a psychotic illness.”

Due to her schizophrenia, she lost at least a year of academic work while at Oxford University and withdrew from Yale Law School early in her first year (and returned the following year, but only after being evaluated by the head of the psychiatry department at Yale University). Saks, who has experienced hospitalizations, intensive psychotherapy and medication regimes, which, at times, she rebelled against, explained, “Healing takes place in many forms and venues; I couldn’t have survived this illness without colleagues and friends … and accommodating workplaces.”

Saks said she struggled for 20 years with accepting having a mental illness; yet by finally facing the reality, the less the illness defined her. In response to an audience member’s question about how a therapist can be helpful to someone with schizophrenia, she said, “Treating people with dignity and respect goes a long way; for me, feeling understood and cared about was very helpful.”

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