Two scenarios: In one, I tell a friend I’ve been having more panic attacks than normal. She responds with sympathy; even if she’s never experienced anxiety herself, she has a basic understanding of what it means and how it manifests. In the other, I tell the same friend about delusions I’d had in which I thought the traffic lights were sending me secret messages — only to be met by a palpable thud of discomfort.
There’s reason to be cautiously optimistic about the way we’re starting to talk about mental illness — indeed, the fact that people are talking about it at all is an encouraging step forward. Take old Hollywood stars like Clara Bow, diagnosed with schizophrenia later in life, who hid their mental-health problems for fear of becoming “unmarketable”; compare that with the celebrities openly discussing their depression or anxiety now: Catherine Zeta-Jones, Carrie Fisher and Demi Lovato to name just a few.
There are obviously still missteps — if not episodes of glaring offensiveness — when people talk about depression and anxiety. But that’s the thing: When “mental illness” enters the cultural conversation, it’s usually as a synonym for depression or anxiety. The less palatable, more frightening facets of mental illness, like psychosis? They’re still ignored, often leading to those experiencing psychosis to remain silent. And that’s a problem, say researchers who study mental-health stigma, because it could be stopping people with psychosis from getting the treatment they desperately need.
Psychosis, in broad terms, is a condition that causes hallucinations, delusions, or thought disorders. This can include auditory or visual hallucinations, delusions of grandeur or persecutory delusions, and sometimes catatonia, an extreme loss of motor skill. And if it is indeed talked about less than, say, depression, it could be at least partly because psychosis is so much less common. According to the National Alliance on Mental Illness, 100,000 young people experience a psychotic episode per year, compared to 16 million who will have an episode of major depression within that same time period. Overall prevalence of psychosis (which, it’s important to note, can also be a symptom of major depression) stands at roughly 3 percent of the U.S. population (or about 9 million people), with depression affecting around 22 million, or 7 percent, of the population.
Empirical evidence also suggests that many people with psychosis have likely had similar interpersonal experiences as the one described above. Research has suggested that individuals with psychosis are “viewed most negatively by the public” and experience the most discrimination compared to people with other psychiatric disorders, said David Kimhy, associate professor of clinical psychology at Columbia University Medical Center. In other words, people with psychosis make up the most highly stigmatized group within those with mental-health issues.
It’s not hard to imagine why. For one, consider the representation of psychosis in the media. As William T. Carpenter Jr., a professor of psychiatry at the University of Maryland School of Medicine, told me, when psychosis is spoken about, it’s often “when we hear about mass shootings, bizarre events or crimes, and it can be used to discredit a person or idea.”
And so it makes that many people might feel uncomfortable sharing their experiences of psychosis, particularly with their employers. It’s not an unfounded concern: One 2006 study found that half of U.S. employers are “reluctant” to hire people with past psychiatric history, a figure that rises to 70 percent for those taking anti-psychotic medication. But it’s kind of lose-lose; not telling an employer about an episode of psychosis would lead a quarter of the surveyed employers to dismiss an employee.
The consequences of this stigmatization stretch beyond employment. A 2014 literature review published in the journal Administration and Policy in Mental Health and Mental Health Services found that public stigmatization is a “pervasive barrier that prevents many individuals in the U.S. from engaging in mental health care.” In 2004, psychiatrist Patrick Corrigan, of the University of Chicago, argued that, in order to avoid being labelled “mentally ill,” people actively decide not to seek or participate in care. This, he says, diminishes patients’ self-esteem and prevents them from engaging in “social opportunities” such as friendships or relationships. In the U.S., three years typically pass between the time the first symptoms of psychosis manifest and their eventual diagnosis and treatment.
There is good news here: Stigma-reducing campaigns have quietly been surfacing. The National Alliance on Mental Illness (NAMI) has a Stigma Free pledge, and the American Psychological Association (APA) has recently launched a new journal, Stigma and Health, which covers the impact of public perception on mental and physical diseases. Whether these campaigns are working, however, is hard to tell.There have been few studies examining the question systematically, Kimhy said, and most involve small samples of individuals with schizophrenia or related disorders. So far, efficacy of such interventions has been mixed, though there are some “promising results.”
In the meantime, there is one thing that individuals with psychosis can do to wear down this stigma: Speak openly about it, Kimhy said. “In my experience as a clinical psychologist treating individuals who are at risk for psychosis, the availability of published stories about individuals with psychotic experiences who are professionally and socially successful are highly important,” he told me.
A few prominent individuals are already leading the way. He gives the example of Elyn Saks, associate dean at the University of Southern California and a MacArthur Foundation Fellowship winner, who has written about her schizophrenia, and Eleanor Longden, another sufferer of schizophrenia who has written and spoken extensively on her illness. People like Saks and Longden, “who talk about psychosis publicly, represent real-world success stories in which the potential for living life to the fullest is achievable,” said Kimhy. Put in plainer English: It helps to talk.