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When Elyn Saks spoke to a standing-room only crowd during a recent Grand Rounds, the room remained riveted for the full hour as she vividly recounted her unprecedented journey as a person living with schizophrenia. Saks, who also spoke during the hospital’s annual National Council meeting last month, emphasized the need for more compassion and awareness in understanding and treating those who live with mental illness.
“Mentally ill people are whole people,” she said. “Society needs to understand the fullness and wholeness of their lives.”
Schizophrenia, she explained, affects a person’s relationships in many ways. One must think in terms of having a relationship with one’s own identity as a mentally ill person, one’s relationships with social networks and the broader society, and one’s relationship with the political systems that govern our lives.
When Saks was first diagnosed with schizophrenia at age 28 while attending law school, she didn’t accept that she had a mental illness. Her treaters, at the time were skeptical that she would ever hold down a full-time job and thought that maybe she would “be able to work as a cashier counting change.”
“What’s central to treatment,” she said, “is to be supportive of the patient. Listen—not judge, and to know that not one size fits all. Sometimes simply asking the patient what he or she wants can help.”
Her clinicians could not have been more wrong.
Despite the diagnosis and the challenging road she had to take, Saks is a successful and much sought-after professor at the University of Southern California Gould School of Law with an adjunct appointment in the department of psychiatry at the medical school of the University of California, San Diego. She is also on the faculty of the New Center for Psychoanalysis, has received several prestigious awards, and in 2009 received a “genius grant” from the MacArthur Foundation that she used to establish the Saks Institute for Mental Health Law, Policy, and Ethics at USC. She presented a Ted Talk about mental health in 2012 that has been viewed more than 2 million times.
“Excellent psychoanalytic treatment, close family and friends, and medication have been critical to my success,” she said, but she pointed out that she struggled for 20 years to fully understand and accept her illness. “In the manner of speaking I developed with my psychoanalyst, I was three people,” she said: “‘Elyn,’ ‘the Professor,’ and ‘the lady with the medical charts.’ I didn’t want to be the lady with the medical charts. I refused to accept my prognosis.”
“I thought that by not taking medication, the lady with the medical charts would disappear, but I failed miserably. I thought I didn’t try hard enough to get off of them.”
But every time she went off her medication she lost touch with reality, she said, describing how she would seclude herself in her home for long periods of time, was not able to eat or sleep, and how she sometimes heard voices and saw people (“a man standing over me with a knife”), and how she suffered from paranoia and sheer terror.
It was the relationships in her life, she said, that always brought her back from the edge and helped her to live a “productive and meaningful life.” She credited her lifelong friends, supportive colleagues, and her husband whom she married in her mid-40s.
“Any close relationship,” she said,“provides another set of eyes for someone living with a mental illness. Healing takes place through relationships.”
In addition to those relationships, she attributed her eventual ‘mind-clearing’ to clozapine, the best drug out there for me, she said. “It helped me realize I would need to be in treatment for the rest of my life.”
“The more I accepted my illness, the better I got,” she explained. “I eventually realized I was all three of those people. Accepting my illness allowed Elyn and Professor Saks to flourish, and the lady of the medical charts to diminish.”
Saks said she welcomes the opportunity to speak to audiences around the world to help break the stigma of mental illnesses, raise awareness, and most of all, give hope. “Being diagnosed with schizophrenia is not a sentence to a bleak and painful life. You can have a meaningful life and get to enjoy relationships with other people.”
She is currently conducting research with colleagues about other successful people living with schizophrenia, to show that she is not alone in her journey. Those people are doctors, lawyers, teachers, and graduate students, she said. “They are all doing fairly well. Most people—when given enough resources—can live up to their potential.”
“It is gratifying,” she said, “to give hope to those to suffer from schizophrenia and understanding to those who don’t.”
McLean Hospital’s National Council is a group of advocates, ambassadors and philanthropists dedicated to the hospital’s mission of improving the lives of individuals and families affected by mental illness.