Linda was diagnosed with schizophrenia as a teenager and has been trying to distance herself ever since. She accepts that she has a mental disorder, but she doesn't like the term stigma. She said people think it is violent, amoral, and unsanitary.
A group is trying to change the name of the illness to something else. Replacing the term "schizophrenia" with something less frightening and more descriptive will change how the public sees people with a diagnosis.
The Massachusetts Mental Health Center is associated with Beth Israel Deaconess Medical Center in Boston. The group has been working with psychiatrists at Harvard to get the attention of the public for a name change.
Doctors are afraid to use that term with people and their family members because of its association with hopelessness and dangerousness. People with the condition don't want to be associated with that name.
Many patients and their families don't seek treatment until after the illness has wreaked considerable damage, because clinicians often avoid making such a devastating diagnosis.
About 1,200 people connected to schizophrenia were asked by Dr. Mesholam-Gately and her team if it should be called something else.
Nine alternative names were proposed based on the experience of people with schizophrenia. Altered perception disorder is one of them.
74 percent of respondents favored a new name in principle, even though none of the options had overwhelming approval. The path to an official change remains steep, as the field of schizophrenia researchers and advocates is divided on whether a change would actually reduce stigma and improve the lives of people with the disorder.
Dr. Matcheri Keshavan is the academic head of Psychiatry at Beth Israel Deaconess and a co-author of the study. Any change has to be gradual. Nobody will accept sudden changes.
The American Psychiatric Association can make the change in the Diagnostic and Statistical Manual of Mental Disorders in the United States after reaching a consensus among its scientific advisers. The World Health Organization has an international classification of diseases.
The term "schizophrenia" was created in 1908 by Dr. Eugen Bleuler. He argued that the disorder was characterized by a split of psychological functions where the personality loses its unity.
Many psychologists and researchers say that the term has been wrongly applied over the last century. It is often confused with a disorder called multiple personality disorder. It has been replaced by a new language called "schizophrenic."
Schizophrenia has long been seen as an untreatable disease. She and her family assumed that when she started having delusions at 15.
She said that she thought silver cars were C.I.A., green cars were Army, blue cars were Air Force, and black cars were Secret Service.
After recovering sufficiently from her illness, she was able to start working on her doctorate at the University of Mississippi, but then she had another psychotic break.
She decided to blow it up after she stood outside the gas station. I didn't.
The image is.
When she was young, Ms. Larson decided to abandon her PhD program and began taking the drug clozapine.
A doctor told Ms. Larson to abandon her program.
She was prescribed clozapine in the 1990s after 20 years of hospitalizations and suicide attempts.
Although clozapine can have serious side effects, Ms. Larson said she has not had a psychotic break since. She was married for 32 years and published four books of poetry.
The term has not evolved with the treatment.
Dr. Mesholam-Gately said that not all respondents supported a name change. It was feared that an unfamiliar name would make it harder for patients to apply for insurance. The new name might cause doctors to over diagnose patients. The term was ingrained in the culture.
The editor of Schizophrenia Bulletin, Dr. William Carpenter, said he has seen these semantic debates play out for decades.
Dr. Carpenter said that a rose by any other name would smell the same. How long until the stigma catches up with you if you make the change?
The term "schizophrenia" may delay critical treatment after a first psychotic episode. The average gap between diagnosis and treatment is two to three years. He was not sure if changing the name would close the gap.
He said that if a teenage patient goes to the doctor with telltale symptoms, it could be a sign of something. If the doctor uses a new name for the diagnosis, the parents will probably say, "Didn't that used to be called schizophrenia?"
This may be the wrong time to change the name. The definition of schizophrenia is being changed to focus more on brain mechanisms, not just psychological symptoms, as well as viewing it more as a syndrome than a single disease. It may not make sense to change the disorder before the changes are reflected in future revisions.
Some mental health professionals are skeptical of the effort to change its name.
The director of the Treatment Advocacy Center, which supports people with severe mental illness, agrees that language is important, but she doesn't think changing the name is a good use of limited resources.
Better medications that work for more people are the best way to destigmatize schizophrenia.
While other countries have changed their names for schizophrenia, the United States needs more of a consensus among scientists.
They note that there is precedent for changing mental health terminology. In 1980, the illness known as manic depression was relabeled as bipolar disorder. Intellectual disability became a reality in the year 2013. After years of advocacy, the categories for autism were changed in the most recent version of the psychiatric diagnostic manual.
Dr. Mesholam-Gately said that even if the Consumer Advisory Board succeeds in persuading the authors of the next diagnostic manual to change the name, it won't be enough to reduce stigma and discrimination. To really explain what the condition is and the treatments that are available for it, there needs to be public education campaigns that go along with that.
