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This summer, I celebrate the ninth anniversary of writing under my own name about my schizophrenia; the decision as to whether I should use my real name was a difficult struggle. Doing so has drastically changed my life for the better, both personally and professionally.
I was diagnosed with schizophrenia in 2007 and spent 12 very difficult months trying five different medications before resorting to clozapine, which brought me into full recovery. (In treatment-resistant schizophrenia, clozapine can work for some patients when all other medications do not.)
The year I was diagnosed, I left California, where I had attended college, to recover at my parents’ home in Cincinnati. While I was in college, my parents had moved from the Cleveland area to Cincinnati, and I knew almost none of their Cincinnati friends. My new social circle in Cincinnati was primarily comprised of people from my parents’ church, where my dad served as pastor. Many of these church friends welcomed me.
Friends from church did not ask many questions about my schizophrenia, though I am certain they were aware of my history, as I had disappeared for four years and then been hospitalized. But instead of passing judgment, they were kind, taking me out for lunches, concerts, and events. One young woman about my age even invited me to stay with her for a few days at her university, where she was soon to graduate. Her school was an hour’s drive away from my parents’ home. Though I did not completely feel like myself, she made me feel special, valued, and mentally well. I am pleased to still be in touch with this special woman 15 years later.
Unfortunately, outside of the church, things did not go as well as expected.
I remember seeing a family doctor in 2008 for a routine appointment. When she saw I was on antipsychotics, she made it clear to me that “you wouldn’t need this medication if you hadn’t used drugs!” I never used drugs. Many with schizophrenia who have a genetic predisposition, like me, will develop schizophrenia no matter what choices they make in life. But at the same time, today, I see many suffering people self-medicating with drugs, and I realize that their addiction is, in fact, a disability.
I had hoped that many of my former friends from California, where I had studied before the onset of my schizophrenia, would have an interest in communicating with me following my recovery. However, unfortunately, again, this was generally not the case. People who knew me during my period of psychosis seemed frightened of me after I disclosed my schizophrenia. This included a friend who had graduated with a Ph.D. in epidemiology.
When I finally recovered and then transferred to the University of Cincinnati in 2009 to finish my bachelor’s degree in biochemistry and molecular biology, I again began to freely tell many new friends about my schizophrenia, as it was behind me, and I was well. But these new acquaintances and friends also seemed afraid. It was as though they did not know what to say or how to respond. Many walked away.
I soon realized that in most situations, I could not disclose without rejection, lack of understanding, or even fear. However, when I chose to keep all of my history to myself, I felt like I was living under a shadow, and no one knew who I really was. Relationships without trust were empty and sometimes felt meaningless. I wished my peers could know the whole story and that, if they did, I might find acceptance.
My life after writing in my own name
In my memoir, I hoped to get my reader deep into the mind of a homeless person suffering from delusions of grandeur, wandering the streets, collecting garbage to eat, and sleeping outside. And the miracle of recovery: that someone so desperately ill could don a backpack again and resume college with nearly straight A’s, as though none of this had ever happened. I was honest and held back nothing.
That summer, my mother also published her own book called Flight from Reason: A Mother’s Story of Schizophrenia, Recovery, and Hope. Within a few weeks, my life had changed.
A reader contacted me early that summer to say, “You’re brave.” Others said that they learned about schizophrenia and how the experience of psychosis feels. Caregivers contacted me to learn more about recovery, especially about clozapine for my treatment resistance.
Today, since my story is open to the general public, I share my history freely with friends and acquaintances and have felt acceptance. People know me at a different level, and friendships are meaningful.
Making the decision
Making the decision to disclose or not to disclose one’s schizophrenia is not an easy one. On the one hand, it is freeing to invite your peers and friends into your life, sharing the most difficult details—becoming vulnerable and relying on trust. On the other hand, the stigma and misunderstanding of schizophrenia are unmistakably strong and, at times, fatal to relationships.
Perhaps it has been easier for me to disclose because I work in mental health and am not seeking a job in the general community, which I have learned can be so hostile to people with schizophrenia. The CURESZ Foundation, where I serve as President, features 35 survivors who are thriving despite schizophrenia. Each of them has had to decide whether to use their real name. About a third have chosen to publish under a pen name.
I wish we lived in a world where schizophrenia and psychosis were seen as medical problems that can go away with treatment and that persons can recover and move on. I hope someday persons with schizophrenia will freely disclose their illness as though it were diabetes, cancer, or arthritis. We’re not there yet, but with medical advancements and education, I do see a gradual and encouraging change.
