Every parent’s worst nightmare. These are the words one mother used in a magazine article to describe her child having schizophrenia. When hearing her daughter’s diagnosis, another mother blurted out that she’d wished she had leukemia or some other disease instead. Even after the doctor told her that schizophrenia is much more treatable than leukemia, she said she’d still prefer leukemia. *
We see schizophrenia as a devastating diagnosis. We assume that our loved ones are doomed to a horrible life. This is something Psych Central blogger Rebecca Chamaa, who has schizophrenia, hears often. “People say it’s the worst thing that could happen to you. To hear that all the time and to be put in that category all the time, it’s a terrible thing to do to people.”
Chamaa pens the insightful blog Life with Schizophrenia. “I like to write so that people know I am an average woman, who is married, finished college and had a successful career as a social worker,” she says on her about page.
Many of us see schizophrenia as one-dimensional. We think in stereotypes and caricatures from TV, movies and news media. We assume that people with schizophrenia don’t want to work or can’t work, said Dawn I. Velligan, Ph.D, professor and co-director of the Division of Schizophrenia and Related Disorders at the Department of Psychiatry, UT Health Science Center at San Antonio. But “supported employment programs are an evidence-based practice that prove that individuals with schizophrenia and serious mental illness can have jobs in the competitive marketplace.”
For instance, in this randomized trial, Cook and colleagues noted:
Not only did individuals with schizophrenia fare comparatively well in evidence-based practice supported employment programs, they outperformed their counterparts with other diagnoses in control condition programs. This is particularly noteworthy since, at study baseline, individuals with schizophrenia had significantly higher levels of symptoms, greater number of months hospitalized over their lifetimes, younger ages of illness onset, lower education, poorer work histories, and lower work motivation than those without schizophrenia.
Another outdated notion is that people with schizophrenia can’t live in the community, Velligan said. If they’re provided with access to proper treatments, they absolutely can. “Problems arise when medications are prescribed that are too expensive, individuals have no insurance, long waiting times to see a psychiatrist who can prescribe medications….”
Of course, schizophrenia looks different in different people. Some people struggle more than others, said Colleen Mullen, Psy.D, LMFT. Mullen was a team leader of an assertive community treatment program, managing professionals who helped clients with severe mental illness live on their own or with supportive help.
Chamaa underscored that she doesn’t speak for everyone with schizophrenia. For instance, she attends an inner city church, which serves many homeless people, some of whom have schizophrenia. Chamaa’s cousin, who also has the illness, is in a state psychiatric hospital.
And that’s the whole point: Schizophrenia is a highly heterogeneous disorder with individuals along all points of the spectrum. But we shouldn’t assume that just because someone has schizophrenia, their prognosis is poor.
Doctors told Elyn R. Saks that she wouldn’t be able to live independently or hold a job or find love. Today, Saks is the Associate Dean and Orrin B. Evans Professor of Law, Psychology and the Behavioral Sciences at the University of Southern California Gould Law School. She is a mental health advocate. She is happily married. And she is the author of the powerful memoir The Center Cannot Hold.
“I’ve known many people with schizophrenia just here in San Diego who went from living in long-term locked facilities to living in their own apartments and having relationships and working in the community,” Mullen said.
When she was a team leader, Mullen was responsible for buying hygiene and life supplies for their 51 clients. One client accompanied Mullen on her shopping trip. To thank the client for helping her shop, Mullen offered to buy her a snack. But after 10 minutes, she was still standing in the same aisle. Mullen asked her if something was wrong or if she could help. The client replied: “I just never thought I’d be able to pick out my own food again.”
“I will never forget that moment,” said Mullen, now the founder of the Coaching Through Chaos private practice and podcast in San Diego. “I told her to take as much time as she wanted and of course, this would not be the last time she would have this opportunity.”
The real devastating part about schizophrenia is the stigma. Schizophrenia is a lonely disease, which doesn’t receive much support. As Chamaa writes on her personal blog, “not too many people talk about it (unless it has to do with a crime) and people definitely aren’t turning their social media a certain color to raise awareness.”
Regardless of whether you’re a family member of someone with schizophrenia, you can do a lot to help. You can stop perpetuating the above outdated notions. You can volunteer at mental health organizations. You can “try not to globalize those outlying instances of bad behavior or sensationalized news with an entire population of people,” Mullen said.
Schizophrenia isn’t the worst thing that can happen to someone. “It really isn’t,” Chamaa said. Schizophrenia is “a serious illness that needs to be treated.” It is a complex illness, which has a high risk for substance abuse, depression and suicide. People do struggle, and lifelong management is key.
“I think I have a beautiful life,” Chamaa said. And for so many people with schizophrenia, a beautiful life is possible. It’s important that we realize this, too.
* This story appears in E. Fuller Torrey’s book Surviving Schizophrenia: A Manual for Families, Patients and Providers.
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