One of the things that keeps mental illness stigma alive is that many psychiatric terms are widely misused. For example, many people still think “schizophrenia” refers to having multiple personalities or that being “psychotic” is about being violent.
In many cases, terms for mental illnesses as used by the general public have connotations held over from times when mental illness was very poorly understand. When common usage doesn’t keep pace with scientific research, fighting stigma becomes difficult: scientists learn more about mental illnesses, but this knowledge doesn’t make its way out into society.
Starting in the 1990s, a Japanese advocacy group led by families of people with schizophrenia started pushing for a radical but simple solution to this problem. They proposed that the easiest way to get rid of the outdated understanding of schizophrenia still common in the country among people without medical training was to rename the disorder entirely.
For most people in Japan, the term then used for schizophrenia, Seishin Bunretsu Byo (“mind-split-disease”) implied an untreatable disorder that people never recovered from and that made people violent and dangerous. The term was also associated with a legacy of inhumane laws present for much of the twentieth century that stripped those diagnosed with schizophrenia of their legal rights and often resulted in them being confined indefinitely in isolation.
The connotations of the term made it hard for doctors to discuss the diagnosis with their patients. In 1999, about half of all psychiatrists in the Japanese Society of Psychiatry and Neurology (JSPN) revealed a diagnosis of schizophrenia to their patients only occasionally. A mere seven percent told all their patients about the diagnosis as a rule.
As a result of this difficulty doctors had informing patients about schizophrenia, it’s estimated that as of 1997, about 167,000 patients with schizophrenia who’d spent at least a year in Japanese psychiatric wards didn’t even know their diagnosis.
So JSPN decided to rename the disorder. After all, it couldn’t possibly make the situation any worse. Starting in late 2002, schizophrenia became known as Togo Shitcho Sho (“integration disorder”) in Japan.
Over the next few months, the new term spread rapidly through the psychiatric profession. Within seven months, 78 percent of psychiatrists in Japan were using it.
As usage of the new term grew, it got easier to tell people about their diagnosis. Thirteen months out, 86 percent of doctors surveyed said they found it easier to communicate with their patients using the new term.
Based on that, you might guess more psychiatrists would start disclosing the diagnosis to their patients, and you’d be right. In 2002, 36.7 percent of patients were informed about their schizophrenia diagnosis. In 2003, that number was 65.0, and in 2004 it was 69.7.
The changes weren’t limited to the psychiatric profession. The new term also started to work its way into the general public, and into the media. In the ensuing decade-and-a-half, the image of schizophrenia in Japan has started to shed some of the historical weight burdening it down.
This year, a team led by researchers from the University of Tokyo analyzed 4677 articles about schizophrenia. They found that the portion of articles portraying people with schizophrenia as dangerous and threatening increased until the name change, then started to decrease. The same wasn’t true for articles about bipolar disorder, suggesting the timing wasn’t just coincidence.
Did renaming schizophrenia eliminate all stigma in one fell swoop? Of course not. But did it lead to real, meaningful progress? The answer appears to be yes, both in terms of how doctors and patients communicate and how the disorder is represented in the media. Words can carry deeply layered historical associations, and if we’re serious about spreading mental health awareness, we have to keep that in mind.
What d’you think? Would you like to see some psychiatric terms replaced?