September 7, 2022 – Pooja Mehta started having anxiety and hearing voices when she was 15 years old.
“I was lucky to have incredibly supportive parents who insisted that I get professional help. I was totally against the idea, but I listened to them,” says Mehta, who lives in Washington, D.C. He was diagnosed with an anxiety disorder with auditory hallucinations.
But her parents were very worried about how her diagnosis would be received by others.
“I grew up in a South Asian community, and my parents made it very clear to me that information about my mental illness would not be well received in the community and that I shouldn’t tell anyone about it,” she says. .
Beyond a few family members and friends, Mehta, who is now 27, has not shared her diagnosis.
She understands that her parents’ advice was for her own protection. But, she says, “I internalized it as self-stigma and felt that mental illness was something to be ashamed of, which led to me being very disengaged in my care and trying to convince myself that everything was fine. If a patient is not committed to their therapy or medical treatment, it will not work very well.
When Mehta entered college, she had a panic attack. She told her closest friend in the dorm. The friend told the college authorities, who asked Mehta to leave because they considered her a danger to herself and others.
“The first time I really told my whole story to people other than intimates at home was to a group of college administrators at a meeting where I was forced to defend my right to stay on campus and complete my studies,” she said, describing the reunion as an “incredibly hostile experience.”
She and the trustees reached an “agreement”, where she was allowed to remain enrolled at the university but not live on campus. She returned to her family’s house and commuted to class.
This experience motivated Mehta to start talking about the stigma of mental illness and to tell her story openly. 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’re Not Alone: The NAMI’s Guide to Navigating Mental Health – With expert advice and wisdom from real people 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 to fight the stigma surrounding the disease and educate the public about what it means. having mental health issues.
Duckworth says he was inspired to write the book after his own family’s experience with mental illness. His father suffered from bipolar disorder, but there was no “social permission” or permission within the family to talk about his father’s condition, which he said was shrouded in secrecy and shame.
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 out of the house.
“Something that could move an entire family hundreds of miles has to be the most powerful force in the world, but no one was willing to talk about it,” he said at the time.
Wanting to understand his father led Duckworth to become a psychiatrist and learn practical tools to help people with mental illness.
When Duckworth was a resident, he had cancer.
“I was treated as a hero,” he says. When I came back, people brought pans. But when my father was admitted to the hospital for mental illness, there were no cheers or stews. It was such a difference. Like me, my dad had a life-threatening illness that wasn’t his fault, but society treated us differently. I was motivated to ask, ‘How can we do better?’ »
His passion for answering this question eventually led him to become the alliance’s chief medical officer and begin writing the book.
“It’s the book my family and I needed,” he says.
The “silver lining” of COVID-19
According to the National Alliance on Mental Illness, approximately 52.9 million people – about one-fifth of all American adults – suffered from a mental illness in 2020. Mental illness affected 1 in 6 young people, 50% of mental illnesses for life beginning before age 14.
Since the COVID-19 pandemic, mental health has deteriorated, both in the United States and around the world, Duckworth says. But a “silver lining” is that the pandemic “has turned mental illness from a ‘they’ problem to an ‘us’ problem. So many people have suffered or are suffering from mental illness that discussions about it have normalized and the stigma has diminished. People are now interested in this topic like never before.
For this reason, he says, “it is a book whose time has come”.
The book covers a wide range of topics, including diagnoses, navigating the US healthcare system, insurance issues, how best to help loved ones with mental illness, practical advice on managing ‘a range of mental health issues, addiction that occurs with mental illness, how to deal with the death of a loved one by suicide, how to help family members who don’t believe they need help, how to help children, 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 with mental illness have unique expertise that stems from their direct experience and differs from the expertise that scientists and medical professionals bring to the table.
Tell their story
Mehta became involved with the National Alliance on Mental Illness shortly after her confrontation with university administrators.
“That event inspired me to start a NAMI chapter at the university, and it’s become one of the largest student organizations on campus,” she says. Today, Mehta sits on the national organization’s board of directors.
She encourages people with mental illness to tell their stories, noting that the alliance and several other organizations can “provide a space to share in a safe and welcoming environment – not because you feel forced or pressured, but because that it’s something you want to do if and when you feel ready.
Duckworth hopes the book will provide helpful information and inspire people with mental illness to realize they are not alone.
“We want readers to know that there’s a large community out there struggling with the same issues, and to know that there are resources and advice available,” he says.