Want to Understand Delusions? Listen to the People Who Have Them

In their paper, Ritunnano and her colleagues quote people who describe experiences of newfound purpose, profound guilt, and oneness with the universe. The World Psychiatry study, which takes a capacious approach to characterizing psychosis across all its phases, highlights experiences that include childhood isolation, feelings of relief at the onset of delusions, and loss of a sense of self. None of these experiences appear in the DSM criteria for a schizophrenia diagnosis.

When it comes to understanding how delusions actually work, some researchers argue that lived experience is an invaluable tool. Even the idea that a delusion is a belief doesn’t necessarily hold up, according to Louis Sass, professor of clinical psychology at Rutgers University. Some individuals, he says, partially recognize that their delusions are false. Others may attest strong belief but hesitate to act on their delusions, which is not typical of a firmly held belief. Sass says this suggests that several distinct phenomena may be conflated under the label “delusion.” “If you want to pursue any kind of research, including neurobiological research, you need to bear that in mind,” he says. Distinct sorts of delusions could in principle have very different neural underpinnings — and those could be missed if all people with delusions are lumped into a single category for a brain scan study.

Even hallucination, an ostensibly simpler category, may cover multiple distinct experiences. Nev Jones, an assistant professor at the University of Pittsburgh School of Social Work who herself has direct experience of psychosis, has found in her research that “auditory” hallucinations are not necessarily as auditory as people assume. In a 2015 paper, she and her colleagues reported that under half of people with auditory hallucinations actually experience them as voices. For others, they more closely resemble thoughts than sounds. The mistaken assumption that these hallucinations involve sound, Jones says, could lead neuroscience awry. “You’re conceptualizing and operationalizing a phenomenon in a certain way, which would lead you to expect certain functional patterns in the brain,” she says. “And you’ve completely misunderstood and mischaracterized the underlying core phenomenon.”

These misunderstandings do not just influence how delusions and hallucinations are conceptualized and studied — they affect how clinicians go about making people feel better. Often in psychiatric clinical trials, the goal of treatment is simply to bring down numbers on the PANSS, says Philip Corlett, an associate professor of psychiatry at Yale University. Reducing someone’s score may involve getting them to acknowledge that their delusions are false, but that might not always be the best step forward. Ritunnano and her colleagues argued in their article that, although some delusions may be terrifying or lonely experiences, others can create meaning, positive emotions, or a profound sense of wonder. The goal of treatment, says Corlett, should be “helping [patients] change or reconcile the things that are most bothersome about the experience, rather than making assumptions based on what we’ve read in the textbook. ” And identifying those goals requires listening to what psychosis is like for each person.

Sarah Keedy, an associate professor of psychiatry and behavioral neuroscience at the University of Chicago, as well as a clinical psychologist, has found this approach essential to her therapeutic practice. She has worked with people who find their delusions so distressing that they barely leave the house — and rather than trying to resolve the delusion, she focuses on that distress. Treating these patients, she says, does not involve convincing them that they are wrong — it involves listening, building trust, and then making small suggestions that might improve their quality of life, like taking a walk around the block.

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