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How Can We Have a More Empathic View of Psychosis?
Answer: Learn from those who experience it
Voices came from the din of the air conditioner. Often, my body seemed to dissolve beneath me. Or I’d just feel like I wasn’t real. Other times, I’d be sitting somewhere—say, at dinner with my mother or walking down the street—and I’d be watching myself from above or from a distance. Most often, the world around me would become remote, as if I was in a dream.
None of these experiences rate as true psychosis. The voices weren’t in my head. My body disappearing and feeling unreal is called depersonalization. Watching yourself from outside yourself and the world falling away is referred to as derealization. Both were terrifying.
They’re the closest I have to understanding what it might be like for someone with psychosis: a break from reality, a breaking-off between the self and the world. It may go without saying, but schizophrenia, the most well-known diagnosis of psychotic disorders, has nothing to do with a “split personality.” Psychosis can take many forms but simply put, its hallmarks are hallucinations (seeing or hearing things that aren’t there) and delusions (believing things that aren’t real).
Schizophrenia and related disorders are the most stigmatized. As Elizabeth Shin puts it, “Common stigma for those with schizophrenia is the idea that they are naturally violent and chaotic, excluding them socially, or labeling them with harmful words.” It isn’t just the public and the media doing the stigmatizing. A 2020 study found that mental health professionals stigmatize patients diagnosed with schizophrenia more so than any other disorder.
Most of us need to understand psychosis to curb our prejudices and implicit biases. We can even do it for reasons other than getting people the resources they need and becoming better humans. Sometimes, recovery or relief from our own distress—any kind of distress—requires getting outside ourselves and understanding other people’s experiences.
A Brief History of Schizophrenia
References to psychosis date back to ancient Egypt and India. During the late nineteenth century (see, a very short history—we skip millennia), Emil Kraepelin, the grandfather of psychiatric diagnoses, referred to it as dementia praecox (no real relation to the dementia we know today). Although he categorized psychosis as a single diagnosis, by the end of his career, he doubted the validity of it, writing that schizophrenia might “not represent the expression of particular pathological processes, but rather indicate the areas of our personality in which these processes unfold.”
In 1911, the Swiss psychiatrist Eugen Bleuler used the term schizophrenia to describe the patient’s “split mind”—split from reality, not among personalities or between parts of the self. (There has been ongoing debate if Bleuler thought a patient was split from reality or split between parts of the self, using schizophrenia as a synonym for dissociation; most, however, agree that he wasn’t referring to split personalities.)
Psychoanalytic theory has had its own views of psychosis. Sigmund Freud believed that psychoanalysis couldn’t help someone with schizophrenia. The neo-Freudians blamed patients’ families, specifically (and unkindly) overcontrolling “schizophrenogenic mothers.”
Throughout the various editions of the Diagnostic and Statistical Manual of Mental Disorders, psychiatry’s handbook of disorders, definitions and categorizations of schizophrenia changed. At first, it was seen as schizophrenic reaction and included nine subtypes, including simple, chronic, catatonic (in a stupor), paranoid, schizoaffective (which seemed to overlap with mood disorders), childhood, and residual (when a person no longer has an acute “schizophrenic reaction” but shows what they called residual disturbance). Later editions renamed it schizophrenia disorder, schizophrenia, and, finally, schizophrenia spectrum disorders.
Hopeless and Deteriorating?
Schizophrenia has been conceived of as a hopeless, lifelong, inevitably deteriorating condition. The idea that the disorder is necessarily chronic and/or lifelong has been disproven many times. In 1987, Courtenay Harding published the landmark Vermont longitudinal study of people with schizophrenia. Harding was a registered nurse studying research psychology at the University of Vermont. She was tasked with following up with patients who’d been diagnosed with schizophrenia in the 1950s. A long-term psychiatric study of its kind had never been done. Schizophrenia was thought of as chronic or deteriorating at best and hopeless and incapacitating at worst. But Harding found that one-half to two-thirds had “achieved considerable improvement or recovered.”
If that was true of schizophrenia, what of other supposed chronic, hopeless disorders? Harding would later point out the grave effect of calling any mental illness deteriorating or chronic or lifelong. She writes: “These perceptions about schizophrenia have pervaded and guided clinical judgments, treatment programming, policy formulation, and decisions about priority for funding. [They] have also stripped hopes of recovery from patients and their families.”
In Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs and the Astonishing Rise of Mental Illness, Robert Whitaker cites studies showing stirring rates of recovery. One NIMH study saw 73 percent of patients diagnosed with schizophrenia discharged after just one year and remaining in the community three years after discharge. Another study found that 85 percent of patients discharged within five years successfully lived in the community more than six years later. Overall, Whitaker found that these studies indicated that only 20 percent of patients with schizophrenia will need to be continuously hospitalized.
Knowing all of this isn’t enough. During his twenty-plus years of research, stigma researcher Patrick Corrigan has shown that education doesn’t lessen stigma. All those well-intended mental health awareness campaigns and celebrities making documentaries about their disorders and social media posts don’t help; contact with people with the condition does.
In the digital age, we can be in the company of those with psychosis in different ways, including at least one YouTube channel. Living Well with Schizophrenia is devoted to helping those with schizophrenia-spectrum disorders. I can’t publicize or recommend it highly enough—even if you don’t experience psychosis. The force behind this YouTube channel, Lauren Kennedy, is a social worker, a mental health advocate, a person living with schizoaffective disorder, and a mom.
The channel is truly one of the best things on the internet. Kennedy generously shares her experience. She’s genuine, raw, open, and helpful—never smug or melodramatic. Her videos offer insights on everything from what it’s like to be hospitalized to ten signs that she’s slipping into psychosis to her struggles with taking medication to her moment-by-moment experience of schizophrenia symptoms:
Although she focuses on psychotic disorders, I could relate much of what she says to my own experience of mental illness.
Living Well with Schizophrenia is an example of what real mental health awareness looks like. Here’s her excellent video explaining psychosis:
(To learn more about Living Well with Schizophrenia’s online support community, watch this video.)
Although it seems gimmicky, CNN ran a segment in which Anderson Cooper uses a schizophrenia simulator. Cooper wears the simulator while trying to go about his day as usual. It’s compelling to watch a TV personality who is by no means short on ego so humbled once he realizes what it’s like to hear distressing voices.
Obviously, this is just a simulator, and psychosis is different in each person. Many of the comments below the video on YouTube discuss whether Cooper’s experience is realistic. Here’s a video of Lauren Kennedy judging how accurate schizophrenia simulators really are.
Some people don’t see hearing voices as a problem and incorporate them into their lives. You can read about Caroline Mazel-Carlton, who did just that, in this article published in The New York Times Magazine: “Doctors Gave Her Antipsychotics. She Decided to Live with Her Voices.” The article also talks about the Hearing Voices Movement, which offers an alternative view of hallucinations and delusions: nonconsensus realities. The movement and its flagship nonprofit, the Hearing Voices Network, argues that psychosis worsens because society says it’s wrong and shameful. By accepting hallucinations and delusions as part of the human experience, they have less of a hold and won’t silence and isolate people who have them.
It’s up to us to better understand people with psychosis. This is one way to start.
I want to leave you with a resource: SAMHSA’s Early Serious Mental Illness Treatment Locator.
The one thing we know about mental illness and emotional stress, particularly psychosis, is that it has a compounding effect. The sooner we get people the treatment they need, the better the outcomes and chances for recovery. The Early Serious Mental Illness Treatment Locator is a confidential and anonymous resource for those experiencing psychosis and their loved ones. There are evidence-based programs vetted by the SAMHSA. They offer medication, therapy, family and peer support, education and employment support, and other services.
SAMHSA outlines those who might benefit from these services in this way:
“Individuals who experience a first onset of serious mental illness - which can include a first episode of psychosis - may experience symptoms that include problems in perception (such as seeing, hearing, smelling, tasting or feeling something that is not real), thinking (such as believing in something that is not real even when presented with facts), mood, and social functioning.”
Read the exclusive publication of Cured: The Memoir for free through 2023. The premise of Cured is simple: recovery from mental illness, even serious mental illness, is possible.