Exploring the lived experience of psychosis

June 9, 2022

By Courtney Wise

Good morning, MindSite News readers. In this issue, find out why some researchers on schizophrenia want to find out more about psychosis by talking with the people who actually experience it. How internet celebrity Elyse Myers created a “safe space” on TikTok to share her struggles with mental health. Why an Intensive Management Unit in prison may be code for “solitary confinement.” Plus: team sports are good for kids’ mental health.

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Researcher: To understand delusions, try chatting with people who have them

For decades, Dr. Sohee Park approached the work of understanding the minds of people with schizophrenia by becoming an expert at working memory. In making this the focus of her research, Park was following convention to discover what causes the psychosis associated with the illness — a finding that could then suggest how to treat it. But over time, she and a small group of researchers have determined that, in addition to conventional research methods, it’s critical to examine patients’ lives more closely in order to gauge the day-to-day experience of someone with psychosis and learn how it works.

“In the rush toward wanting to be accepted by biological and physical scientists,” Park told Wired magazine, “what we have left behind is, who is experiencing this stuff? Who are the people who actually have these experiences? We do symptom interviews all the time, where we ask set questions about symptoms—and these are very standardized, and that’s what we’re supposed to do. [But] we never really just chat about life, or their philosophy on life, or how they feel about their condition in general” – an approach that falls under the rubric of qualitative research.

Her approach within the field of psychiatry stands out because, as Wired reports, academic psychologists have long preferred quantitative and neuroscientific methods over the personal accounts of people whose narratives may be less reliable due to delusion. However, Park and other scientists like her believe that personal narratives are an invaluable tool. 

Nev Jones, an assistant professor at the University of Pittsburgh who has experienced psychosis herself, takes hallucinations as an example. She said that her expanded research has been able to show that “auditory” hallucinations aren’t necessarily always auditory. In many instances, rather than appearing as voices, the hallucinations more closely resemble thoughts. Continuing to describe both such experiences as auditory, she said in the article, could lead neuroscientists to “completely misunderstand” the phenomenon. (See our Research Roundup for more on new findings on psychosis and new research incorporating the lived experience of people with schizophrenia).

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Internet sensation Elyse Myers created a “safe space” on TikTok to be open about mental health

Elyse Myers may be accidentally famous. It’s only been about one year since she began regularly posting videos on TikTok, many of which are centered around mental health. But ever since a funny video recounting the time she bought 100 tacos on her worst date ever went viral, the comedian has become an online sensation, with 5 million followers tuning in to laugh, relate, and be inspired to share their vulnerability around the highs and lows they experience with mental health. Recently, she spoke in depth with People magazine about her experiences with anxiety, depression, ADHD, and how she has managed to continue to thrive. 

One of the biggest takeaways she offered is that her experiences with anxiety and depression are chronic. “For a while, I believed that it would get better, and that it would stay better forever once I figured out how to fix it,” she wrote. “I quickly realized that it was always going to be something that was up and down, and I would have to learn how to live life, and be productive, and engage with the people in my life, even if I was in a down season and learning what that means when you don’t feel well.” Both therapy and medicine help her to manage her mental health and live a good life. 

Myers also had some insight to offer to those who love people struggling with mental illness, particularly those committed to “fixing” or “healing” the burden: “You cannot take this burden of someone’s struggling mental health away from them. You can just get in the trenches, and be in it with them,” she said. If you must take action, she advises, the best thing to do is sit and listen, and if necessary, help guide them to qualified mental health professionals.

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Pennsylvania prison’s Intensive Management Unit is “driving men mad”

Solitary confinement for prolonged periods has been condemned by the United Nations as a form of torture that can undermine and even destroy mental health. However, thousands of prisoners throughout the United States are entombed in “solitary,” with only a short daily break for exercise, according to the ACLU.

Black prisoners at the Pennsylvania State Correctional Institute Phoenix have suffered perhaps a still crueler fate, in that the prison’s new special “Intensive Management Unit” was sold to them as a way to get off the state department of corrections’ Restricted Release List, which restricts all inmates on it to indefinite solitary cells, according to The Philadelphia Inquirer. Instead, the Inquirer reported, inmates again found themselves in solitary – this time with harsh lights on 24 hours a day.

Inmate Caine Pelzer, for example, had already spent a combined 13 years in solitary confinement before his transition to the IMU for holding “too much influence” in prison. He was motivated to make the move. But although Pennsylvania prison administrators have acknowledged the harm caused by solitary confinement and promised to roll back its use, Pelzer described his experience in IMU solitary confinement as more appalling than before, according to the Inquirer. “The men are losing their minds,” he told the newspaper.

Since his arrival in the IMU, Pelzer himself has begun to experience migraines from the 24/7 bright lights and is now on medication for anxiety and depression. An acquaintance, Hassan Tucker, has become suicidal. Another, Yassin Mohamad, said that he’s started to hear voices, but according to the newspaper, reports of his symptoms have been ignored: a diagnosis of serious mental illness could release him from the IMU. Like other inmates in solitary, they would receive some relief if President Joe Biden carried out his campaign promise to end virtually all solitary confinement, but this year’s May 25 executive order — which included a directive to reduce solitary confinement in federal prisons — fell short of that.

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Can team sports help improve your child’s mental health?

A press release about a recent study of more than 11,000 youth aged 9 to 13 out of California State University Fullerton has found that kids who participate in team sports struggle less with mental health than their non-sports peers. In fact, the research, which was conducted before the pandemic, found youth in team sports were less likely to show signs of anxiety, withdrawal, depression, social problems and attention problems. “We know that kids benefit from social interactions,” said Dr. Matt Hoffmann, the study’s lead author. “They can make friends on teams. They generally, hopefully, have a good time, and these factors might sort of protect them from any mental health challenges or difficulties they might experience.” 

Interestingly, the same study found that youth who play individual sports – including gymnastics, tennis, golf, and swimming – have more mental health difficulties than their peers who don’t play sports. The pressure of competition can be a lot on young people who have to play alone, Hoffman said, increasing the risk of anxiety, depression and social withdrawal. But he emphasized, parents should not worry or discourage their children from playing individual sports. His advice: ​​“We just need to pay attention perhaps a little bit more with kids who are playing individual sports.” 

In other news…

Is therapy worth it? In a well-worth-the-read column for British Vogue, writer Ella Risbridger calls therapy a luxury that she’d rather not spend money on but that she believes has saved her life, declaring, “It saves my life every day.”

It’s not just U.S. teens who feel in danger at school. A large international study just reported that out of nearly 22,000 teen students aged 13-15 in 13 European and Asian countries, nearly a third reported feeling unsafe, including 69% of teens surveyed in Japan, according to the Free Press Journal. The study from the University of Turko, published in Frontiers of Psychiatry, found bullying undermined a feeling of safety, while teachers who showed they cared contributed to it. Recommendations included school-based anti-bullying programs and social-emotional learning.

(See MindSite News’ recent stories about social-emotional learning in Michigan schools and other schools throughout the United States.)

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If you or anyone you know is considering suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255. And if you’re a veteran, press 1.

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