Renaming schizophrenia … PSS
We thank Anoiksis, the Dutch patients association of and for people who are vulnerable to psychosis (Anoiksis is Greek for the opening out in spring), for this contribution
Since its adoption, the name schizophrenia has acquired a degree of stigma, which has recently been further heightened as a result of a number of isolated incidents involving patients attacking innocent bystanders. This stigma is acknowledged by many to be a hindrance to the acceptance, understanding, and thereby, treatment of the actual condition.
In recognition of this we held a national competition in 2009 to find a new name, and informed the American Psychiatric Association (Goliath to our David). Several alternatives were considered, including “dysfunctional perception syndrome” and “Bleuler syndrome”, before the final proposal “psychosis susceptibility syndrome (PSS)”, was accepted.
In the summer of 2014 we wrote a letter about it to The Lancet which was published in the correspondence columns of The Lancet Psychiatry (Vol. 1, Is. 2, July 2014, pp. 110–111), a new journal in The Lancet family.
Knowing that our alternative name could also acquire a stigma after a few more alarming headlines, we furthermore followed the Japanese example. They had changed the name to integration disorder or syndrome, but had also improved public perception by holding public meetings, conducting surveys, and introducing the public to more accurate ideas about dysfunctional sensory and conceptual integration.
For our part, we have developed a novel form of public education in our booklet “Psychosis? Me?” This is founded upon patients’ own experiences, together with some suggestions on how best to cope with them. We have found that these accounts of how it feels – based on many sessions together compiling patients’ experiences – are helping other patients to better understand and accept themselves.
It is our hope that these accounts and explanations will also give the general public a more accurate impression of the nature of the illness.
Thanks to our sponsors: The Karel Geelen Fund (part of the Dutch Mental Health Fund), and the Friends of Ypsilon (Dutch families association); we are able to make the link to our beautifully illustrated flip-over booklet available to the English-speaking world free of charge.
(Tip: at the bottom of the screen, next to the zoom button, is the toggle switch to make use of the full screen.)
Professor Norman Sartorius, President of the Association for the Improvement of Mental Health Programmes, said about our illustrated booklet,“I found the text clear and the amount of information given is, in my opinion right. It will be a great help for many.” (Quoted by permission.)
Mark Millard, Chartered Psychologist & founder of LifeSmarter.net, wrote: “Love the flipping book! Clever, engaging & very nicely presented. Was it done by someone in your group or did you employ someone specially? Looks like a lot of love & care went into making it, from sharing, writing and no doubt editing (!) the stories through to the presentation. The stories are much more compelling & ‘real’ than some stuffy set of symptoms! Hats off & congratulations.” (Quoted by permission)