For decades, Linda Larson has been trying to distance herself from the diagnosis she was given as a teenager: schizophrenia. She accepts that she has the mental disorder but deeply resents the term’s stigma. People hear it and think, “violent, amoral, unhygienic,” she said.
Ms. Larson, 74, is part of a group trying to remove that association — by changing the name of the illness. The idea is that replacing the term “schizophrenia” with something less frightening and more descriptive will not only change how the public perceives people with the diagnosis, but also how these people see themselves.
Ms. Larson is a member of the Consumer Advisory Board of the Massachusetts Mental Health Center, which is associated with Beth Israel Deaconess Medical Center in Boston. The group has been working with psychiatrists at Harvard to build momentum for a name change, most recently through a national survey published in the journal Schizophrenia Research.
“That term over time has become so associated with hopelessness, with dangerousness, with volatile and erratic behavior, that doctors are afraid to use that term with people and their family members,” said Dr. Raquelle Mesholam-Gately, a Harvard psychologist and the lead author of the new paper. “And people who have the condition don’t want to be associated with that name.”
As a result, she said, clinicians often avoid making such a devastating diagnosis and many patients and their families don’t seek treatment until after the illness has wreaked considerable damage.
Dr. Mesholam-Gately and her team asked about 1,200 people connected to schizophrenia — including those with the disorder, their family members, mental health providers, researchers and government officials — whether it should be called something else.
The survey proposed nine alternative names, based partly on the experience of people diagnosed with schizophrenia. Among them: altered perception disorder, attunement disorder, disconnectivity syndrome, integration disorder and psychosis spectrum disorder.
Although none of the options had overwhelming approval, 74 percent of respondents favored a new name in principle. But the path to an official change remains steep, as the field of schizophrenia researchers and advocates remains divided on whether a change would actually reduce stigma and improve the lives of people with the disorder.
“We have to take this on in a systematic way,” said Dr. Matcheri Keshavan, the academic head of psychiatry at Beth Israel Deaconess and a co-author of the study. “Any change has to be gradual. Sudden changes, nobody will accept.”
In the United States, the decision is up to the American Psychiatric Association, which would make the change in its official diagnostic manual (the Diagnostic and Statistical Manual of Mental Disorders, or D.S.M.) after reaching consensus among its scientific advisers. (The World Health Organization also oversees an international classification of diseases.)
The term “schizophrenia,” which derives from Latin words for “split mind,” was coined in 1908 by Dr. Eugen Bleuler. He argued that the disorder, previously considered a type of dementia, was characterized by a “splitting of psychological functions” where “the personality loses its unity.”
But the term has often been misunderstood and wrongly applied over the last century, many psychologists and researchers say. It is often confused with dissociative identity disorder, previously known as multiple personality disorder. “Schizophrenic” has also been usurped by colloquial language, often as an insult.
Part of the problem is schizophrenia has long been misunderstood as an untreatable disease, Ms. Larson said. That is what she and her family had assumed in the 1960s when, at 15, she started having delusions and psychotic episodes.
“For a while, I thought silver cars were C.I.A., green cars were Army, blue cars were Air Force, black cars were Secret Service,” she said.
By her twenties, she recovered sufficiently to start working on a doctorate in literature at the University of Mississippi, but then she had another psychotic break.
She stood outside gas station and decided to blow it up, she said: “I had a Bic lighter in my hand and I stood there. And for some reason I didn’t.”
A doctor diagnosed Ms. Larson with schizophrenia and suggested that she abandon her Ph.D. program.
She went through 20 years of sporadic hospitalizations and several suicide attempts until the 1990s, when she was prescribed the antipsychotic drug clozapine.
Although clozapine can have serious side effects, Ms. Larson found it transformative; she said she has not had a psychotic break since. She has published four books of poetry and was married for 32 years until her husband’s death in 2020.
“The term schizophrenia hasn’t evolved with the treatment,” Ms. Larson said.
But Dr. Mesholam-Gately said that not all survey respondents supported a name change. Some worried that an unfamiliar name would make it harder for patients to apply for disability or insurance coverage. Others said that if the new name was too broad, doctors might diagnose patients excessively. And some considered the term just too ingrained in the culture.
Dr. William Carpenter, a psychiatrist at the University of Maryland School of Medicine and the editor of Schizophrenia Bulletin, said he has seen these semantic debates play out for decades.
“A rose by any other name would smell the same,” said Dr. Carpenter, who was not involved in the survey. “And if you make the change, how long until the stigma catches up with it?”
Dr. Carpenter agreed that stigma surrounding the term “schizophrenia” may in fact delay critical treatment after a first psychotic episode. (The average gap between diagnosis and treatment is two to three years, he noted.) But he was not convinced that changing the name would close that gap.
For example, he said, suppose a teenage patient goes to the doctor with telltale symptoms, such as hearing voices. If the doctor uses a new name for the diagnosis, Dr. Carpenter said, “you can almost hear the parents saying, ‘Didn’t that used to be called schizophrenia?’”
This may also be the wrong moment to tinker with the name, Dr. Carpenter added. Scientists are reworking the clinical definition of schizophrenia, including focusing more on brain mechanisms, not just psychological symptoms, and viewing it more as a syndrome than as a single disease. These changes could be reflected in future revisions of the D.S.M., and it may not make sense to rename the disorder before this happens.
Even some mental health professionals who work to counter its stigma are skeptical of the renaming effort.
“We absolutely agree that language is extremely important,” said Lisa Dailey, the director of the Treatment Advocacy Center, which supports people with severe mental illness, but added that pushing for a name change is not an effective use of limited resources.
The best way to destigmatize schizophrenia, Ms. Dailey said, “is to develop better medications that work for more people.”
While other countries, including Japan and South Korea, have recently adopted new names for schizophrenia, Dr. Meshalom-Gately and Dr. Keshavan acknowledged that they need more of a consensus among scientists and clinicians in the United States.
There is precedent for rethinking mental health terminology, they note. The illness once known as manic depression was successfully relabeled bipolar disorder in 1980. “Mental retardation” became “intellectual disability” in 2013. And the categories for autism were changed in the most recent version of the psychiatric diagnostic manual, after years of advocacy.
Even if the Consumer Advisory Board succeeds in convincing the authors of the next diagnostic manual to change the name, it “is not going to be enough to reduce stigma and discrimination,” Dr. Mesholam-Gately said. “There also needs to be public education campaigns that go along with that, to really explain what the condition is and the treatments that are available for it.”