Sept. 7, 2022 – Pooja Mehta began having anxiety and hearing voices when she was 15 years old.
“I was fortunate to have incredibly supportive parents who insisted that I get professional help. I was very much against the idea, but I listened to them,” says Mehta, who lives in Washington, DC. She was diagnosed with anxiety disorder with auditory hallucinations.
But her parents had a lot of concern about how her diagnosis would be received by others.
“I grew up in a South Asian community, and my parents made it very clear that information about my mental illness would not be received well in the community and I shouldn’t tell anyone,” she says.
Beyond a few household members and friends, Mehta, who’s now 27, didn’t share her diagnosis.
She understands that her parents’ advice was for her own protection. But, she says, “I internalized it as self-stigmatization and felt that mental illness is something to be ashamed of, which led me to be very disengaged in my care and to try to convince myself that nothing was wrong. If a patient is not engaged with their therapy or health care treatment, it won’t work very well.”
When Mehta started college, she had a panic attack. She told her closest friend in the dorm. The friend told college authorities, who asked Mehta to leave because they saw her as a danger to herself and others.
“The first time I really told my whole story to people other than the intimate few at home was to a bunch of college administrators at a meeting where I was forced to defend my right to stay on campus and complete my education,” she says, describing the meeting as an “incredibly hostile experience.”
She and the administrators reached a “deal,” where she was allowed to remain enrolled academically but not live on campus. She moved back to her family’s home and commuted to classes.
This experience motivated Mehta to begin speaking out about stigma in mental illness and openly telling her story. Today, she has a master’s degree in public health and is completing a congressional fellowship in health policy.
Mehta has shared her story in a new book, You Are Not Alone: The NAMI Guide to Navigating Mental Health – With Advice from Experts and Wisdom from Real Individuals and Families, by Ken Duckworth, MD, chief medical officer of the National Alliance on Mental Illness.
Mehta is one of 130 people who shared first-person accounts of their struggles with mental illness in the book, as a way of challenging the stigma that surrounds the illness and educating the public about what it feels like to have mental health challenges.
Duckworth says he was inspired to write the book after his own family’s experience with mental illness. His father had bipolar disorder, but there was no “social permission” or permission within the family to talk about his father’s condition, which was shrouded in secrecy and shame, he says.
When Duckworth was in second grade, his father lost his job after a manic episode and his family moved from Philadelphia to Michigan. He remembers the police dragging his father from the house.
“Something that could move an entire family hundreds of miles must be the most powerful force in the world, but no one was willing to talk about it,” he says he thought at the time.
Wanting to understand his father led Duckworth to become a psychiatrist and learn practical tools to help people who have mental illness.
When Duckworth was a resident, he had cancer.
“I was treated like a hero, he says. When I got home, people brought casseroles. But when my dad was admitted to the hospital for mental illness, there was no cheering and no casseroles. It was such a stark difference. Like me, my dad had a life-threatening illness that was not his fault, but society treated us differently. I was motivated to ask, ‘How can we do better?’”
His passion to answer that question ultimately led him to become the chief medical officer of the alliance and start writing the book.
“This is the book my family and I needed,” he says.
COVID-19’s ‘Silver Lining’
According to the National Alliance on Mental Illness, an estimated 52.9 million people – about one-fifth of all U.S. adults – had a mental illness in 2020. Mental illness affected 1 in 6 young people , with 50% of lifetime mental illnesses beginning before age 14.
Since the COVID-19 pandemic, mental health has worsened, both in the U.S. and worldwide, Duckworth says. But a “silver lining” is that the pandemic “changed mental illness from a ‘they’ problem into a ‘we’ problem. So many people have suffered or are suffering from mental illness that discussions about it have become normalized and stigma reduced. People are now interested in this topic as never before.”
For this reason, he says, “this is a book whose time has come.”
The book covers a wide range of topics, including diagnoses, navigating the U.S. health care system, insurance questions, how to best help loved ones with mental illness, practical guidance about dealing with a range of mental health conditions, substance abuse that happens along with mental illness, how to handle the death of a loved one by suicide, how to help family members who don’t believe they need help, how to help kids, the impact of trauma, and how to become an advocate. It includes advice from renowned clinical experts, practitioners, and scientists.
Among the “experts” included in the book are the 130 people with mental illness who shared their stories. Duckworth explains that people who live with mental illness have unique expertise that comes from experiencing it firsthand and differs from the expertise that scientists and health professionals bring to the table.
Telling Their Story
Mehta became involved with National Alliance on Mental Illness shortly after her confrontation with the administrators at the university.
“This event prompted me to start a NAMI chapter at college, and it became one of the biggest student organizations on campus,” she says. Today, Mehta serves on the national organization’s board of directors.
She encourages people with mental illness to tell their story, noting that the alliance and several other organizations can “give space to share in a safe and welcoming environment – not because you feel forced or pressured, but because it’s something you want to do if and when you feel ready.”
Duckworth hopes the book will provide useful information and inspire people with mental illness to realize they’re not alone.
“We want readers to know there is a vast community out there struggling with the same issues and to know there are resources and guidance available,” he says.