For the first decades of Sohee Park’s career in schizophrenia research, she rarely stopped to consider what life was like for her research subjects. Now a professor of psychology at Vanderbilt University, Park made a name for herself by studying working memory—the quick, scratch-pad-like memory that helps us keep track of what we’re doing. By using simple tasks to deconstruct the workings of the schizophrenic brain, Park hoped to puzzle out the underlying causes of the condition’s reality-bending symptoms—like delusions, false beliefs that are resistant to contradictory evidence, and hallucinations, which often take the form of imagined voices.
“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,” she says. “We never really just chat about life, or their philosophy on life, or how they feel about their condition in general.”
Psychological research on schizophrenia typically looks something like this: A person who has been diagnosed with schizophrenia, or another condition that causes a similar psychosis, takes test after test. Usually, one of these is the PANSS, or “Positive and Negative Syndrome Scale.” Administering this test is generally the only time the researcher will ask their subject about their actual experience of psychosis—and anything the subject says will get distilled into numerical scores from 1 to 7. To the PANSS, a grandiose delusion (“I am the second coming of Jesus”) is the same as a persecutory delusion (“Someone is trying to kill me”) is the same as a referential delusion (“Everyone is talking about me”).
For the past several years, Park has taken a different approach: She asks her research subjects open-ended questions. She’s heard about things far beyond the limits of the PANSS, such as out-of-body experiences; imagined presences; and profound, day-long flow states induced by painting. Now her research focuses primarily on how people with schizophrenia experience their own bodies.
Within psychiatry, Park’s focus on personal experience is unusual. Academic psychologists have long preferred quantitative and neuroscientific methods, like symptom checklists and brain scans, over hard-to-quantify personal narratives. But though they present analytical challenges, these narratives can still be studied. Last month, papers in widely read journals—one in The Lancet Psychiatry and the other in World Psychiatry—have analyzed first-person accounts of delusion and psychosis. To some, this sort of research, which deals in words and ideas rather than numbers and mathematical models, might seem unscientific. But Park, who was not involved in either of those studies, is among a small group of philosophers, psychologists, and neuroscientists who think that first-person accounts provide a better understanding of what psychosis is like and how it works. “In the rush toward wanting to be accepted by biological and physical scientists,” she says, “what we have left behind is, who is experiencing this stuff? Who are the people who actually have these experiences?”
This neglect starts at the point of diagnosis. In the Diagnostic and Statistical Manual (DSM), the so-called bible of psychiatric diagnosis, conditions are defined like scorecards: You must have X of these Y symptoms for Z months to have a particular mental illness. The original goal of this system was to facilitate research by providing some objective basis for deciding who had a mental illness and who did not. But these checklists leave little room for the complexities of real lives. “In my day-to-day encounter with patients, there was very little resonance between what I was listening to in terms of the lived experience—the complexity and the nuance and detail and the context, the life context that this person was describing—and these very reductive boxes that you’re ticking when you make a diagnosis or you think about treatment,” says Rosa Ritunnano, a psychiatrist and doctoral candidate in interdisciplinary mental health research at the University of Birmingham, and the lead author of the paper in The Lancet Psychiatry.