Anoiksis is the Dutch association of and for people with a psychotic susceptibility. Anoiksis is Greek and freely translated means “Open Mind.” Our core business is facilitating peer support. The new name project is a specifically Anoiksis project; and many members have been involved and have made contributions. To the old name are attached prejudices, misleading significance and stigma, and they can be thrown overboard by introducing a new name.
Michael van Oostende set up a competition for a new name for schizophrenia in Fall 2010. There were 320 entries to the competition, from all over the Netherlands and even some from abroad. The name we have finally chosen was not one of the entries: Psychosis Susceptibility Syndrome (PSS).
In July 2013 Cambridge University Press published in their journal Psychological Medicine an article written by two Anoiksis patients, Bill George and Aadt Klijn, calling for the adoption of the new name. Four professionals in the mental health field contributed their comments. The collection of all five articles appears in the section of the journal Psychological Medicine entitled “Forum” in the July issue. The reply by George and Klijn to the commentaries was published as a Letter to the Editor in the September issue. This Letter to the Editor is tucked away at the end of the issue and is easy to overlook.
Click here to access the original article as submitted for the July 2013 issue of Psychological Medicine on pages 2015–2016.
Schizophrenia is a loaded term with negative connotations, since it still conveys an image of people with schizophrenia as all being unreliable, dangerous ‘lunatics’. The term consequently lends itself to stigma and self-stigma. Society stamps persons with schizophrenia with a negative hallmark; they take the negative blueprint to themselves and this gives rise to a negative self-image. Not only does the term call up prejudices, it maintains misunderstandings, because schizophrenia for many means split personality and is therefore misleading. A split personality is in fact quite another disorder and has nothing to do with what we call schizophrenia to date.
The above was reason enough for Anoiksis to seek a new official name for what has been called “schizophrenia” until now. The reasoning is as follows:
– Psychosis: because of the unreality of hallucinations and delusions.
– Susceptibility: since patients are not necessarily continually psychotic (but it is latent).
– Syndrome: since this word includes the negative and cognitive symptoms also associated with the disease.
Negative symptoms are, for example, lack of feelings and energy. Cognitive symptoms are, for example, problems with concentration and memory or a reduced capacity for problem-solving. These symptoms hinder daily and social life and are very persistent.
The new name has come about through Anoiksis’ correspondence with the American Psychiatric Association since 2009. Recently the World Health Organisation has been approached with a request to recognise the new name. Currently the name is not recognised either nationally or internationally. Meanwhile Anoiksis members paint open and honest self-portraits and give realistic descriptions of what living with PSS amounts to. The aim is more knowledge and better understanding of ‘formerly schizophrenia’ (now PSS) on the part of the general public.
As Shakespeare wrote, “A rose by any other name would smell as sweet” (Romeo and Juliet, 1591/1596). In order to reduce the stigma and self-stigma the name change should be accompanied by adequate information so that knowledge of PSS is based on facts rather than on prejudices about the condition. In Japan that has been provided ever since 1993 and this led to an official name change in 2002. The Japanese Society of Psychiatry and Neurology chose the term integration dysregulation syndrome to replace schizophrenia. Misunderstandings and prejudices tended to disappear and patients could accept the diagnosis more readily. The same happened with people who have Down syndrome. The name change led to the public insight that they are not their “disease”, but people who have a certain condition. Since this awareness by the public, such people are better accepted and have a better life than in the era when they were collectively hospitalised.
The whole question of the schizophrenia diagnosis is being widely debated especially now that DSM-5 has appeared (Lasalvia and Tansella, 2013). Those most affected by a “diagnosis” have long since claimed the right to have a say (George, 2010). Allen Frances, who was chair of the DSM-IV Task Force, has written a rebellious book about the DSM-5; and Jim van Os, Professor of Epidemiological Psychiatry at Maastricht University and member of the former DSM-5 Psychosis Working Group, is in the process of writing a book arguing that “we need a system of personal diagnosis for each individual patient” and that “the broad syndrome within which this personal diagnosis is made is of secondary importance”. There is a fundamental revolution afoot in psychiatry.
A. Frances (2013), Saving Normal: An Insider’s Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life, William Morrow, New York.
B. George (2010) What’s in a name? Client participation, diagnosis and the DSM-5. Journal of Mental Health 19(6): 479–82. doi:10.3109/09638237.2010.526157 (Open Access)
B. George and A. Klijn (2013). A modern name for schizophrenia (PSS) would diminish self-stigma. Psychological Medicine 43, 1555–1557. doi:10.1017/S0033291713000895
B. George and A. Klijn (2013). Letter to the Editor: A sweeter smelling rose: A reply to our commentators. Psychological Medicine 43, 2015–2016. doi:10.1017/S0033291713001244
A. Lasalvia and M. Tansella (2013). What is in a name? Renaming schizophrenia as a starting point for moving ahead with its re-conceptualization. Epidemiology and Psychiatric Sciences 22: 285–287. doi:10.1017/S2045796013000498
With acknowledgements to De Kentering.