Rebranding disease: a rose by any other name
I recently read an article that made me shake my head in disbelief. In the July 2013 issue of Psychological Medicine, Bill George and Aadt Klijn (foreign affairs coordinators at Anoiksis, a Dutch society for “people with mental vulnerability”) advocated the rebranding of schizophrenia as psychotic susceptibility syndrome (PSS), as they believed that the term schizophrenia was “out of date and out of touch with modern scientific insight into the condition.” PSS is the second proposition in a lengthy discussion, as the winner of a 2009 rebranding competition, dysfunctional perception syndrome (DPS), never caught on in psychiatric textbooks. The new term is meant to improve the image of the disease and reduce stigma, including self stigmatisation, by emphasising that affected people are not in a permanent psychotic state.
My first reaction was that this rebranding exercise is ridiculous. How can the replacement of a well known name with a more jargon filled mouthful deal with fundamental problems such as stigma—and regardless of this point, surely there are more pressing issues for patients and doctors to be getting on with, like the management of such a serious condition? After all, a rose by any other name would smell as sweet.
The idea of renaming schizophrenia isn’t, however, new. In 2002, a group of patients’ families in Japan campaigned successfully for the renaming of seishin bunretsu byo (“mind-split disease”) to togo Shitcho sho (“integration disorder”), as the stigma attached to the old term was great enough to prevent psychiatrists from fully informing patients of their diagnosis. PSS isn’t the first rebranding of schizophrenia in the West either. Eugen Bleuler coined the term in 1908 to replace dementia praecox, as the notion that it is a form of early onset dementia became increasingly untenable.
So is the name game something that concerns only mental health conditions—which are usually hard to define (as shown by the changeable nature of the Diagnostic and Statistical Manual of Mental Disorders)? Actually, the same renaming principle applied in order to achieve a more scientific sounding terminology has even been used for infectious diseases such as leprosy, when, in an attempt to combat age old stigma and misconceptions, leprosy was renamed Hansen’s disease.
So there was nothing for me to shake my head about. One cannot ignore the fact that the initiative for changing a stigmatising name often came from patient groups, representing people who experience all aspects of life with a condition. To them, the name of the rose matters a great deal, as it changes both the way they are seen and treated by others and the way they see and treat themselves. In Japan, after schizophrenia was renamed, the number of those informed of their diagnosis increased, and a follow-up survey showed the new term was widely supported by psychiatrists.
Renaming may not be the answer to everything. For a start, although scientific or medical attitudes may change, it isn’t easy to weed out an established entry from the general dictionary. DPS wasn’t successful, and I definitely knew the condition caused by Mycobacterium leprae as leprosy, not Hansen’s disease. Also, a new word is as problematic as the old one if stigma is simply transferred to it.
Anoiksis acknowledges this difficulty, stating that it “supports the campaign for a modern name (PSS) [in combination] with educational projects that aim to give a realistic impression of people with schizophrenia.” The greatest value of renaming initiatives like that of Anoiksis, in my view, is that it generates attention for a group that otherwise struggles to make its voice heard, triggering a new discussion on what it means to be affected by the condition, whether we label it schizophrenia, DPS, or PSS. It can get us thinking about whether we need to revise our ideas about the smell of the rose, rather than just its name.Eva Dumann, Clegg Scholar, BMJ
1BMA, Tavistock Square, London
Correspondence to: firstname.lastname@example.org
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.
- George B, Klijn A. A modern name for schizophrenia (PSS) would diminish self-stigma. Psychol Med 2013:43:1555-7.
- Sato M. Renaming schizophrenia: a Japanese perspective. World Psychiatry 2006:5:53-5.
- George B, Klijn A. A modern name for schizophrenia: PSS (Anoiksis approved). 2013. www.anoiksis.nl/content/modern-name-schizophrenia-pss-anoiksis-approved.
Cite this as: Student BMJ 2013;21:f4490