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, just usher old negative attitudes into a new world.
Why the Name Change?
Recent research and literature suggest that it is time to change the name schizophrenia to reflect a more accurate description of the condition and to reduce the stigma it carries. 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, MD, 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 Mesholam-Gately, psychologist and assistant professor of psychology in the Department of Psychiatry at Harvard University.
“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 link names for schizophrenia and asked how people felt about those alternate names,” continued Mesholam-Gately.
The alternative names that received the most support were “altered perception syndrome,” “psychosis spectrum syndrome,” and “neuro-emotional integration disorder.” Keshavan, a clinical psychiatrist and academic head of psychiatry at Beth Israel Deaconess, says 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.”
The Burden of Stigma
The stigma associated with schizophrenia and mental illness in general is as palpable as it is detrimental. Having a mental illness is one thing, but the stigma of carrying such a label is an additional load that individuals must carry as well. Not only does a person with schizophrenia have to manage their symptoms and treatment, both medical and behavioral, but they also must dodge negative attitudes, misinformation, and discrimination that comes from an uneducated or judgemental public. This can lead to different forms of stigma — like self-stigma and label avoidance.
In a recent blog published by the National Alliance on Mental Illness, Casey Clabough, a person who lives with a diagnosis of schizophrenia, explained that people who have this serious mental illness can suffer from the backlash of the stigma. He explains that people with schizophrenia can misinterpret reality and behave in ways that the general public doesn’t understand or accept. As a result, they are labeled “crazy,” the public grows fearful of them, and they retreat to social isolation.
The stigma surrounding mental illness is perpetuated from several sources. Media and pop culture inaccurately portray schizophrenia as an out-of-control condition that makes someone prone to violence and more likely to commit crimes. In actuality, people living with schizophrenia are at increased risk of becoming victims of violence. One study found that people with schizophrenia are at least 14 times more likely to be victims of a violent crime than to be arrested for one.
A History of Changes
The term schizophrenia is actually the result of a name change from over 100 years ago. The condition was first identified as a mental illness by Dr Emil Kraepelin, a German psychiatrist who studied the pathogenesis of neurologic and psychiatric disorders. In his studies of dementia in young adults, Kraepelin labeled the symptoms of what we now call schizophrenia as “dementia praecox,” or early dementia.
In 1908, a Swiss professor named Eugen Bleuler challenged the accuracy of the term dementia praecox at a meeting of the German Psychiatric Association in Berlin. During this meeting, Bleuler argued that the term schizophrenia comes closer to describing the splitting of psychic functioning. Bleuler explained how schizophrenia has primary and secondary symptoms. The four primary symptoms (the four As) are:
Autistic behavior and thinking
According to Bleuler, if an individual lacks adaptive capacity and support, these primary symptoms could lead to more pronounced secondary symptoms, such as social withdraw, hallucinations, and delusions.
In later years, more research has been done to gain a greater understanding of the illness. Kurt Schneider, a German psychiatrist, presented a group of select symptoms for diagnosing schizophrenia as First Rank Symptoms (FRS) in 1959. These symptoms may be experienced by people with psychosis.
The problem here is twofold. One, people who have bipolar disorder may also suffer from similar symptoms, which leads to problem number two: misdiagnosis. An examination of a collection of 21 studies on FRS used as a tool for schizophrenia diagnosis showed that FRS misdiagnosed almost 20% of individuals as having schizophrenia when, in fact, they didn’t have the illness.
A Rose by Any Other Name Still Smells Sweet
There is apprehension about the name change from some mental health experts; not all respondents to the survey felt that a name change would help with stigma. Concerns range from potential confusion among medical professionals, to changing the name prematurely before the newest revision of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, to having trouble applying for insurance coverages.
“There is a stigma and people will have [negative] attitudes towards people with schizophrenia,” says William Carpenter, professor of psychiatry and pharmacology at the University of Maryland School of Medicine in Baltimore. “That is going to occur no matter what kind of name you put to it. But the name itself sounds like you’ve been told you have the worst of all mental illnesses. Or you’re never going to get over this, which may be incorrect. So there’s self-stigma, and it’s based on these kinds of feelings.”
Both sides of the debate agree that one vital strategy for reducing stigma and discrimination is education. “Giving information about schizophrenia makes a difference in how people conceptualize and view schizophrenia,” he adds.
“We don’t think that the name change alone is going to completely solve the problem,” Mesholam-Gately admits. “There needs to be more public education and initiatives to help along with it. But we think that changing the name can be a part of reducing the stigma for people who experience the condition. That would be worth it.”
Candace Y.A. Montague is a journalist based in Washington, DC.
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