Virginia Immanuel recommends two books with firsthand testimony about our nation’s mental health care system 

Loud in the House of Myself: Memoir of a Strange Girl
by Stacy Pershall
W.W. Norton & Company, 2011
ISBN-13: 978-0393340792

Madness: A Bipolar Life
by Marya Hornbacher
Houghton Mifflin, 2008
ISBN-13: 978-0547237800

PCORI, the Patient-Centered Outcomes Research Institute that funds a lot of our work, is onto something: No one knows the patient experience better than someone who lives it firsthand. While few of us are lucky enough to have a PCORI Patient Partner at our side, all of us have access to patient insight courtesy of our nearest library. I recently read two memoirs from patients who have suffered from mental illness and yet found the energy and courage to document their experiences. 

A bipolar journey

Madness: A Bipolar Life is Marya Hornbacher’s compelling account of her journey with bipolar disorder, from a rush of turbulence and chaos in her early twenties to a period of hard-won stability ten years later. As is the case with so many who suffer from mental illness, Hornbacher’s condition went undiagnosed and untreated for several years, partly due a mix of other conditions and partly due to a hallmark of bipolar disorder: when she was feeling good, there was no reason to seek help, and when she was feeling bad, she was too miserable to seek help. Then, once she sought care, she had several false starts before finding a doctor who was able to provide effective treatment. Madness is a stand-out memoir, both because the story is so gripping and because Hornbacher is a topnotch journalist. Despite extreme battles with mental illness, she never lost her drive to write, and the result is a book that is by turns funny, touching, and painful to read.

A path to diagnosis

The same description fits Loud in the House of Myself, though the details are very different. Stacy Pershall is a young woman who suffers with borderline personality disorder. Like Hornbacher, she travels a long and troubled path to diagnosis, and a longer path to finding an effective treatment. What makes this book so powerful is Pershall’s remarkable gift for describing what she is feeling in a way that makes sense even to those lucky enough never to have wrestled with this condition.

Both of these books provide firsthand testimony to the shortcomings and the strengths of our health care system, especially for those suffering with mental illness. There are huge frustrations: providers who don’t listen, long wait periods for appointments, gaps in insurance coverage, and more. But there are some positives as well: providers who do listen, drugs that do work, times when needed care is accessible. For all of us who want to improve health care, these are must-read books. 

Virginia Immanuel is Group Health Research Institute’s Director of Information Technology.