Elyn Saks memoir about schizophrenia spurs others to come forward

From The NY Times:

Researchers have long wondered how some people with schizophrenia can manage their symptoms well enough to build full, successful lives. But such people do not exactly line up to enroll in studies.

For one thing, they are almost always secretive about their diagnosis. For another, volunteering for a study would add yet another burden to their stressful lives.

But that is beginning to change, partly because of the unlikely celebrity of a fellow sufferer. In 2007, after years of weighing the possible risks, Elyn R. Saks (pictured), a professor of law at the University of Southern California, published a memoir of her struggle with schizophrenia, “The Center Cannot Hold.” It became an overnight sensation in mental health circles and a best seller, and it won Dr. Saks a $500,000 MacArthur Foundation “genius” award.

For psychiatric science, the real payoff was her speaking tour. At mental health conferences here and abroad, Dr. Saks, 56, attracted not only doctors and therapists, but also high-functioning people with the same diagnosis as herself — a fellowship of fans, some of whom have volunteered to participate in studies.

“People in the audience would stand up and self-disclose, or sometimes I would be on a panel with someone” who had a similar experience, Dr. Saks said. She also received scores of e-mails from people who had read the book and wanted to meet for lunch. She told many of them about the possibility of participating in a research project.

She now has two studies going, one in Los Angeles and another in San Diego, tracking the routines and treatment decisions of these extraordinary people. The movie producer Jerry Weintraub has optioned the book.

It has been a remarkable response, considering that the book was almost abandoned. Dr. Saks surveyed friends and colleagues for years before publishing it and got very mixed advice. Her husband was against it; the risks were too high. Academic colleagues warned her that coming out with a disorder as serious as schizophrenia could only harm her. “You want to be known as the schizophrenic with a job?” one said.

Her friend Stephen Behnke, director of ethics at the American Psychological Association, was supportive of her decision. “I remember talking about it just on the cusp of when she was going to send off the manuscript,” Dr. Behnke said. “I said that we needed to sit down and make sure she was ready for this. It was like she was about to jump off of a cliff.”

Jump she did. With the MacArthur money, she founded the Saks Institute for Mental Health Law, Policy and Ethics to study mental health and society. She is now working on another book, “Mad Women: A Most Uncommon Friendship,” with the author Terri Cheney, who has written about her struggles with bipolar disorder.

“I was very lucky, being in academia, where people have been very accepting of this,” Dr. Saks said. “Most people struggling to manage a severe mental illness do not have the luxury to do what I did.”