The term schizophrenia carries an incredible load with it.
It is not just a moniker for a serious mental condition but also a tool to support discrimination, shame, and condemnation, as multiple recent studies and surveys have shown.
The evidence suggests that many of the insensitivities of decades and centuries past, though certainly much improved, can still linger today. And when stigma is attached to a condition or status, it creates additional burdens on the people who are already enduring the challenges of their diagnosis.
There is a growing movement among patients and mental health experts to change the name of this complex condition because of both the added onus it places on patients and the fact that it’s simply clinically inaccurate. Opponents argue that the change will not create the sought-after results but instead, will just usher old negative attitudes into a new world.
Why the name change?
The term schizophrenia translates to “split mind,” which is misleading from the start. Mental health experts, people who live with the syndrome, and their advocates believe that changing the term to one that is more closely descriptive of the condition can lead to a more tolerant, understanding public.
In 2021, the Consumer Advisory Board at the Psychosis Research Program of the Massachusetts Mental Health Center Public Psychiatry Division of Beth Israel Deaconess Medical Center created a project to collect feedback from key stakeholders about the possibility of a name change. The survey was given to people with lived experience of mental illness and their family members, clinicians, researchers, government officials, and the general public. The results showed that nearly 75% of the people surveyed were ready to embrace a name change.
Matcheri S. Keshavan, MD, and Raquelle I. Mesholam-Gately, PhD, are two of the 13 authors of this study. In an interview, the researchers explained how the study was handled and what the results mean to them.
“About 5 years ago, we were all talking about this idea of renaming schizophrenia. I began thinking that first of all, it doesn’t accurately describe what the condition is, and there’s a lot of stigma associated with the word. We also discussed that the name ‘schizophrenia’ has been changed in several other Asian countries, and there have been some benefits associated with those changes, including people being more comfortable with seeking out care,” said Dr. Mesholam-Gately, psychologist and assistant professor of psychology in the department of psychiatry at Harvard University, Boston.
“We reviewed the literature that was out there already and then we put together a survey that we could give to a broad sample of stakeholders, including people with lived experiences, to get a sense of how stigmatizing they thought the word schizophrenia was and whether they feel that the name schizophrenia should be changed. Then we listed some alternate names for schizophrenia and asked how people felt about those alternate names,” continued Dr. Mesholam-Gately.
The alternative names that received the most support were “altered perception syndrome,” “psychosis spectrum syndrome,” and “neuro-emotional integration disorder.” Dr. Keshavan, a clinical psychiatrist and academic head of psychiatry at Beth Israel Deaconess, said diagnostic name changes have been adopted before in the field and have led to effective results.
“There are several examples in mental health that have gone through this change. For example, autism has been changed to autism spectrum disorder. Manic depressive [disorder] has been changed to bipolar disorder. Mental retardation has been changed to intellectual disability. And those kinds of changes have led to positive benefits and reducing stigma. People are willing to come in for care. For those reasons, we wanted to get the thinking started.”