a temporary relief from stigma?
Reprinted from the "The Language We Use" issue of Visions Journal, 2018, 14 (1), p. 38
Ever since psychiatrist and professor Paul Eugen Bleuler introduced the term “schizophrenia” in 1908, both the diagnosis and the term itself have been subjects of controversy.
The previous term, “dementia praecox,” was considered imprecise and pessimistic (because it implied inevitable deterioration). The new term referred to a “split” (schizo) between mental functions and was perceived to be a more optimistic diagnosis. Yet the “schizo” prefix has also resulted in ongoing confusion between the public and practitioners’ perception of schizophrenia and their views of other mental illnesses, such as dissociative disorder and multiple personality disorder.
People who live with schizophrenia experience high levels of stigma, a situation that has not improved in recent decades. This article focuses on the relationship between the term “schizophrenia” and stigma.
In recent years, both psychiatrists and patients have proposed changing the name “schizophrenia” in response to claims that the term lacks precision and carries stigma. I am not convinced, however, that simply changing the name of the illness will automatically result in less stigma.
As we have seen in the shift from “dementia praecox” to “schizophrenia,” changing the name of an illness is not a new phenomenon—and it certainly isn’t limited to the English-speaking world. In 2002, the psychiatric community in Japan changed the Japanese name of schizophrenia—from the derogatory term “mind-split-disease” (seishinbunretsu-byo) to “integration dysregulation syndrome” (togo-shitcho-sho).
Some early signs suggested that this move could potentially diminish stigma. For example, Japanese clinicians began to tell their patients their diagnosis more frequently, and Japanese university students would associate the diagnosis less often with criminality.1 Yet those who advocate for keeping the name “schizophrenia” argue that stigma is about much more than the name of an illness; changing the name will only create confusion for clinicians and result in a lack of continuity in research.
Stigma can be understood as a problem of ignorance (a lack of education and knowledge), attitudes (a lack of tolerance, and negative emotional responses) and behaviours (discrimination). When we focus on what really matters for patients and family members, it might well be that actual discriminatory behaviours are the most important and damaging dimensions of stigma.
Will a name change (on the level of education and knowledge) significantly affect attitudes and behaviours? We undertook two studies in Montreal, Canada, to explore this question, and published the results of our findings in 2013.2
In the first study, 161 university students were presented with a vignette that described a young man suffering from symptoms of psychosis. Half the participants were told the man had been diagnosed with schizophrenia; the other students were told he had “salience syndrome.” (A currently popular alternative to the term “schizophrenia,” “salience” more precisely articulates the neurocognitive deficits of schizophrenia.3 Among the two groups, we noted no differences in anticipated discrimination (such as whether the young man was more or less likely to have a girlfriend, for example, or to be invited out to dinner).
In the second study, we conducted in-depth interviews with 19 young persons who live with psychosis, focusing on their receiving a diagnosis of schizophrenia and the perceived acceptability of that diagnosis in the context of their lived experience. These participants were also presented with two vignettes, one of which used “schizophrenia” and the other “salience syndrome.” Eight out of 19 participants preferred the label “salience syndrome,” five preferred “schizophrenia,” two liked both labels and four participants rejected both labels (“I don’t want any of them”).
The capacity to conceal a diagnosis with a lesser known term was a popular reason for preferring the less common “salience syndrome.” As one participant put it, “I would like to have another name that I could use when I will be back in society, so I could tell the truth, but they won’t really understand it. I don’t want to lie so I think I’ll just say I have the salience syndrome, yep, that’s it.”
Several participants talked about the concrete advantages of choosing one name or diagnosis over the other—for example, the greater likelihood of being able to return to school. In these cases, participants preferred “salience syndrome” because of the term’s novelty and obscurity, which were both seen as useful traits when it came to avoiding stigma.
Yet even if a new term took the place of “schizophrenia,” it might well be that the new name will also become stigmatized, providing the individual with, at best, only temporary relief from stigma. In the worst-case scenario, a new term will simply be a source of new confusion and misunderstanding.
While words are important, I think that what really matters for persons living with mental illness is their lived experiences of discrimination and the concrete actions taken to combat discrimination and stigma.
About the author
Dr. Tranulis is a psychiatrist who practises medicine and teaches at the Institut Universitaire de Santé Mentale de Montréal
Readers interested in learning more about the Japanese experience may want to read Sato, M. (2006). Renaming schizophrenia: A Japanese perspective. World Psychiatry, 5(1), 53-55, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472254/ and Takahashi, H., Ideno, T., Okubo, S., Matsui, H., Takemura, K., Matsuura, M., Kato, M. & Okubo, Y. (2009). Impact of changing the Japanese term for “schizophrenia” for reasons of stereotypical beliefs of schizophrenia in Japanese youth. Schizophrenia Research, 112(1-3), 149-152.
Tranulis, C., Lecomte, T., El-Khoury, B., Lavarenne, A. & Brodeur-Côté, D. (2013). Changing the name of schizophrenia: Patient perspectives and implications for DSM-V. PLoS One, 8(2), e55998.
Kapur, S. (2003). Psychosis as a state of aberrant salience: A framework linking biology, phenomenology, and pharmacology in schizophrenia. American Journal of Psychiatry, 160(1), 13-23.