September 7, 2022 – Pooja Mehta started being scared and hearing voices at the age of 15.
“I was fortunate to have incredibly supportive parents who insisted I get professional help. I was very against it, but I listened to them,” says Mehta, who lives in Washington, DC. She 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 that any information about my mental illness would not go down well in the community and that I should not tell anyone,” she says.
Aside from a few household members and friends, Mehta, who is now 27, did not share her diagnosis.
She understands that her parents’ advice was for her own protection. But she says: “I internalized it as self-stigmatization and feeling that mental illness was something to be ashamed of, which made me very disconnected from my care and trying to convince myself that nothing was wrong. If a patient isn’t engaged in their therapy or healthcare, it’s not going to 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 themselves and others.
“The first time I really told my full story to people other than the few confidants 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 my… complete your education,” she says. described the meeting as an “incredibly hostile experience”.
She and the administrators reached a “deal” allowing her to remain academically enrolled but not live on campus. She moved back into her family home and commuted to classes.
This experience motivated Mehta to speak out about stigma surrounding mental illness and share her story openly. Today she has a master’s degree in public health and is doing a Congressional Fellowship in health policy.
Mehta has shared her story in a new book, You Are Not Alone: The NAMI’s Guide to Navigating Mental Health – Featuring Expert Advice 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 personal accounts of their struggles with mental illness in the book, in an effort to challenge the stigma surrounding the illness and educate the public about what it feels like to have mental health issues.
Duckworth says he was inspired to write the book after his own family had experiences 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 the second grade, his father lost his job after a manic episode and his family moved from Philadelphia to Michigan. He remembers that the police dragged his father out of the house.
“Something that could move a whole family hundreds of miles has to be the most powerful force in the world, but nobody was willing to talk about it,” he said at the time.
A desire 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 like a hero,” he says. When I got home, people brought casseroles. But when my father was hospitalized with a mental illness, there was no cheering and no crowds. It was such a stark difference. Like me, my father 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 for answering that question eventually led him to become Allianz’s Chief Medical Officer and begin writing the book.
“This is the book my family and I needed,” he says.
The “silver lining” of COVID-19
According to the National Alliance on Mental Illness, an estimated 52.9 million people — about one-fifth of all US adults — suffered from a mental illness in 2020. Mental illness affects 1 in 6 young people, with 50% of lifelong mental illnesses starting before age 14.
Since the COVID-19 pandemic, mental health has deteriorated both in the United States and around the world, Duckworth says. But one “silver lining” is that the pandemic “has transformed mental illness from a ‘you’ problem to a ‘we’ problem. So many people have suffered or suffer from mental illness that discussions about it have normalized and stigma has diminished. People are now interested in this topic like never before.”
For that reason, he says, “this is a book whose time has come.”
The book covers a wide range of topics including diagnoses, navigating the US health care system, insurance issues, how best to help loved ones with mental illness, practical guides to managing a range of mental illnesses, substance abuse associated with mental illness, how to deal with the death of a loved one by suicide, how to help family members who don’t think they need help, how to help children, the effects 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 living with mental illness have a unique expertise that comes from their own experience and differs from the expertise that scientists and healthcare professionals bring to the table.
tell your story
Mehta became involved with the National Alliance on Mental Illness shortly after her confrontation with the university’s administration.
“This event prompted me to start a NAMI chapter in college, and it grew into one of the largest student organizations on campus,” she says. Today, Mehta sits on the board of the national organization.
She encourages people with mental illness to share their stories, noting that Allianz and several other organizations “can provide space to share in a safe and welcoming environment — not because you feel compelled or pressured, but because you want to do it when and when you feel ready.”
Duckworth hopes the book will provide useful information and inspire people with mental illness to realize they are not alone.
“We want readers to know that there is a large community out there struggling with the same issues and that there are resources and guides out there,” he says.