By ELYN R. SAKS
Published: January 25, 2013
LOS ANGELES
THIRTY years
ago, I was given a diagnosis of schizophrenia. My prognosis was “grave”: I
would never live independently, hold a job, find a loving partner, get married.
My home would be a board-and-care facility, my days spent watching TV in a day
room with other people debilitated by mental illness. I would work at menial
jobs when my symptoms were quiet. Following my last psychiatric hospitalization
at the age of 28, I was encouraged by a doctor to work as a cashier making
change. If I could handle that, I was told, we would reassess my ability to
hold a more demanding position, perhaps even something full-time.
Then I made
a decision. I would write the narrative of my life. Today I am a chaired
professor at the University of Southern California Gould School of Law. I have an adjunct
appointment in the department of psychiatry at the medical school of the
University of California, San Diego, and am on the faculty of the New Center
for Psychoanalysis. The MacArthur Foundation gave me a genius
grant.
Although I
fought my diagnosis for many years, I came to accept that I have schizophrenia
and will be in treatment the rest of my life. Indeed, excellent psychoanalytic
treatment and medication have been critical to my success. What I refused to
accept was my prognosis.
Conventional
psychiatric thinking and its diagnostic categories say that people like me
don’t exist. Either I don’t have schizophrenia (please tell that to the
delusions crowding my mind), or I couldn’t have accomplished what I have
(please tell that to U.S.C.’s committee on faculty affairs). But I do, and I
have. And I have undertaken research with colleagues at U.S.C. and U.C.L.A. to
show that I am not alone. There are others with schizophrenia and such active
symptoms as delusions and hallucinations who have significant academic and
professional achievements.
Over the
last few years, my colleagues, including Stephen Marder, Alison Hamilton and
Amy Cohen, and I have gathered 20 research subjects with high-functioning
schizophrenia in Los Angeles. They suffered from symptoms like mild delusions
or hallucinatory behavior. Their average age was 40. Half were male, half
female, and more than half were minorities. All had high school diplomas, and a
majority either had or were working toward college or graduate degrees. They
were graduate students, managers, technicians and professionals, including a
doctor, lawyer, psychologist and chief executive of a nonprofit group.
At the same
time, most were unmarried and childless, which is consistent with their diagnoses.
(My colleagues and I intend to do another study on people with schizophrenia
who are high-functioning in terms of their relationships. Marrying in my
mid-40s — the best thing that ever happened to me — was against all odds,
following almost 18 years of not dating.) More than three-quarters had been
hospitalized between two and five times because of their illness, while three
had never been admitted.
How had
these people with schizophrenia managed to succeed in their studies and at such
high-level jobs? We learned that, in addition to medication and therapy, all
the participants had developed techniques to keep their schizophrenia at bay.
For some, these techniques were cognitive. An educator with a master’s degree
said he had learned to face his hallucinations and ask, “What’s the evidence
for that? Or is it just a perception problem?” Another participant said, “I
hear derogatory voices all the time. ... You just gotta blow them off.”
Part of
vigilance about symptoms was “identifying triggers” to “prevent a fuller blown
experience of symptoms,” said a participant who works as a coordinator at a
nonprofit group. For instance, if being with people in close quarters for too
long can set off symptoms, build in some alone time when you travel with
friends.
Other
techniques that our participants cited included controlling sensory inputs. For
some, this meant keeping their living space simple (bare walls, no TV, only
quiet music), while for others, it meant distracting music. “I’ll listen to
loud music if I don’t want to hear things,” said a participant who is a
certified nurse’s assistant. Still others mentioned exercise, a healthy diet,
avoiding alcohol and getting enough sleep. A belief in God and prayer also
played a role for some.
One of the
most frequently mentioned techniques that helped our research participants
manage their symptoms was work. “Work has been an important part of who I am,”
said an educator in our group. “When you become useful to an organization and
feel respected in that organization, there’s a certain value in belonging
there.” This person works on the weekends too because of “the distraction
factor.” In other words, by engaging in work, the crazy stuff often recedes to
the sidelines.
Personally,
I reach out to my doctors, friends and family whenever I start slipping, and I
get great support from them. I eat comfort food (for me, cereal) and listen to
quiet music. I minimize all stimulation. Usually these techniques, combined
with more medication and therapy, will make the symptoms pass. But the work
piece — using my mind — is my best defense. It keeps me focused, it keeps the
demons at bay. My mind, I have come to say, is both my worst enemy and my best
friend.
THAT is why
it is so distressing when doctors tell their patients not to expect or pursue
fulfilling careers. Far too often, the conventional psychiatric approach to
mental illness is to see clusters of symptoms that characterize people.
Accordingly, many psychiatrists hold the view that treating symptoms with
medication is treating mental illness. But this fails to take into account
individuals’ strengths and capabilities, leading mental health professionals to underestimate
what their patients can hope to achieve in the world.
It’s not
just schizophrenia: earlier this month, The Journal of Child Psychology and
Psychiatry posted a study showing that a small group of people who were given
diagnoses of autism, a developmental disorder, later
stopped exhibiting symptoms. They seemed to have recovered — though after years of behavioral
therapy and treatment. A recent New York Times Magazine article described a new
company that hires high-functioning adults with autism, taking advantage of
their unusual memory skills and attention to detail.
I don’t want
to sound like a Pollyanna about schizophrenia; mental illness imposes real
limitations, and it’s important not to romanticize it. We can’t all be Nobel
laureates like John Nash of the movie “A Beautiful Mind.” But the seeds of
creative thinking may sometimes be found in mental illness, and people
underestimate the power of the human brain to adapt and to create.
An approach
that looks for individual strengths, in addition to considering symptoms, could
help dispel the pessimism surrounding mental illness. Finding “the wellness
within the illness,” as one person with schizophrenia said, should be a
therapeutic goal. Doctors should urge their patients to develop relationships
and engage in meaningful work. They should encourage patients to find their own
repertory of techniques to manage their symptoms and aim for a quality of life
as they define it. And they should provide patients with the resources —
therapy, medication and support — to make these things happen.
“Every
person has a unique gift or unique self to bring to the world,” said one of our
study’s participants. She expressed the reality that those of us who have
schizophrenia and other mental illnesses want what everyone wants: in the words
of Sigmund
Freud, to work and to love.
Elyn R. Saks
is a law professor at the University of Southern
California and the author of the memoir “The Center Cannot Hold: My Journey
Through Madness.”
Joseph
N. de Raismes
General
Counsel
Mental Health America
303.808.9468
