As an expert in mental health policy, Elyn Saks is highly accomplished in her field. She graduated from Yale Law School, teaches law, psychology and psychiatry at the University of Southern California Law School and is a recipient of many honors, including a prestigious MacArthur fellowship.
She also lives with schizophrenia – a diagnosis she revealed in her memoir, “The Center Cannot Hold: My Journey Through Madness.”
High achievements and severe mental illness are not mutually exclusive, but many people may not know much about schizophrenia beyond media depictions associating it with violence, failure or deviancy.
Schizophrenia is a lifelong, psychotic disorder that affects fewer than 1% of the U.S. population, but is one of the most stigmatized mental illnesses. It affects how people think, feel and act and is most commonly characterized by delusions and hallucinations, impaired cognitive thinking and difficulty socializing with others, which can make it difficult for some — but not all — to access treatment or maintain employment and housing.
If left untreated, schizophrenia can result in outcomes such as substance use, homelessness, social isolation and even suicide. People have also associated it with mass violence or shootings, whichhave been linked in some past research papers. However, psychologists warn the relationship between schizophrenia and violence is often oversimplified and rarely ever causal.
“While there is a relationship between mental illness and violence, it’s not the best predictor. There are other risk factors that come into play but are often cherrypicked out (of reports),” says Patrick Corrigan, a professor of psychology at Illinois Institute of Technology.Other predictors include gender, age, substance use history and history of legal problems, but “when we focus solely on mental health, it adds to the stigma and fear.”
The reality is that many people can manage the disorder to lead fulfilling lives.
“A common misconception is that we’re unable to care for ourselves and that’s not true,” Saks says. “For some people it is, but not for all of us. We can have relationships –romantic and friendships. But we often don’t see that (in the media) because of the emphasis on sensationalism and ‘othering’ us.”
What is schizophrenia?
When people imagine schizophrenia, they often envision erratic behavior, “talking to yourself and saying nonsense,” Corrigan says. But what is it really?
The exact causes, likely a combination of genetic and environmental factors, are unclear. But common symptoms include visual hallucinations and thought delusions, which cause those with schizophrenia to see or hear things that deviate from reality. In her own experience, Saks “would sometimes have the belief that I killed hundreds of thousands of people with my thoughts” or “had hallucinations of a man standing in front of me with a raised knife in the middle of the night.”
Others may also experience what psychologists call negative symptoms, such as anhedonia (the failure to experience pleasure), flat affect (the lack of emotional expression or reaction) or they may withdraw from relationships and work. These symptoms tend to be more difficult to address.
“People who meet the criteria for schizophrenia likely have several different things going on, and it’s not always uniform across all people,” says William Carpenter, a psychiatrist and professor at the University of Maryland School of Medicine whose research focuses on schizophrenia.
“Some will have trouble with cognition. Others will have impaired motor symptoms. But what’s shared among them is they, in some way, have false belief systems that lead to this diagnosis.”
Another prevalent assumption is that a schizophrenia diagnosis involves multiple, different personalities. It’s a stereotype likely stemming from its misleading nomenclature: The Latin prefix schizo means “split.”
But experts warn multiple personalities, more formally known as dissociative identity disorder (DID), is a separate diagnosis that “may have a higher rate of dissociation, this out-of-body feeling, but it doesn’t involve any kind of hallucinations or delusions (as in schizophrenia),” according to Corrigan.
Can schizophrenia be cured?
Certain treatments have been proven to help keep symptoms at bay. Antipsychotic medications can reduce hallucinations and delusions, while therapies and rehabilitations can address specific concerns, like teaching cognitive techniques or enhancing social skills to interact with others.
“I resisted medication for many years, because I didn’t like the side effects,” Saks says. “But also, I didn’t like to think that I had a mental illness, which is something I resisted for many years.”
With therapy and medication, “my life got better,” Saks says. “I wouldn’t dream of getting off medication now, and therapy has been equally important in processing what’s happening, understanding things that get in my way and understanding my relationships more.”
However, these interventions, which are “very important to know about,” are not curative. “Nothing is approaching the cure or full prevention, so in that regard, we still have a long way to come,” Carpenter says.
In need of therapy?:The importance of finding a good therapist – and why it’s so difficult
‘The stigma is very real and it can be very deadly.’ What needs to be done?
As a successful professional with schizophrenia, Saks says the need to debunk myths about mental illness is crucial in understanding the complex disorder and encouraging treatment and social support.
A 2012 study found that a majority of schizophrenic characters across 41 movies displayed violent behavior, with a third of those characters displaying homicidal tendencies.
While it’s true that some may exhibit aggression or unpredictability when their symptoms go untreated or when combined with substance use, research has supported that most are not actually violent: Serial killers are more likely to exhibit antisocial personality disorders (such as sociopathy or psychopathy), according to the American Psychiatric Association, and those with schizophrenia are at increased risk of becoming victims, rather than perpetrators, of violence.
“The stigma is very real and it can be very deadly,” says Carpenter, who worries it can exacerbate feelings of hopeless and isolation. “When there are so many misconceptions about what schizophrenia really is, then large numbers are treated improperly or in ways devoid of the therapeutic techniques that are available.”
Proper education is key in de-stigmatizing and treating schizophrenia. But the next, and “most important” step is making psychosis more approachable and understandable. Mental illness can pose real-life limitations, but Saks wants people to know their experiences should be depicted as multi-faceted and unique, rather than demonized as something to be feared.
“Putting a human face on this mental illness does reduce stigma,” she urges. “And people with schizophrenia should be able to come forward with their stories without being afraid of jeopardizing their work life or relationships.”
We care about depression and anxiety:Where’s the empathy when it comes to manic episodes?