I was very nervous when my editorial about schizophrenia — there we go, a word I ought not to be using — appeared Open Access online in the December 2010 Journal of Mental Health (published by Informa Healthcare, New York). It contains personal details which it is not customary to reveal. Having got over that I had more anxiety when the printed journal was delayed by a month for unknown reasons. Now that it’s out I am calm again.
Why should I not be using the ‘S’ word? What’s in a name?
The answer is that it has acquired a stigma in the course of a hundred years owing to the small minority of people with our condition who are violent and attack or kill other people.
Furthermore, according to Jim van Os, a professor of psychiatry at Maastricht University in the Netherlands and an invited member of the American Psychiatric Association’s DSM 5 Psychotic Disorders Work Group, the diagnosis may itself be a source of stigma. It is mystifying and confusing: people with schizophrenia do not have a split personality; the condition does not, according to Jim, exist as a distinct illness; it is a ragbag of symptoms such that calling it anything other than a syndrome is totally misleading.
So what name are the Work Group going to recommend to the APA? Probably “psychotic syndrome.” Now we, as consumers — for I am one — do not find that appealing. It is pathological. “I am a psycho” sounds weird.
What are the alternatives? It could be called “the Bleuler syndrome” after the Swiss professor of psychiatry who put forward the word schizophrenia in 1908 to replace the previously stigmatized term dementia praecox, or premature senility.
Another suggestion is made by Anoiksis, the Dutch consumer association of which I am a member: Dysfunctional Perception Syndrome (DPS). But I find the dysfunctional bit negative and tend to shorten it to Perception Syndrome. After all the medical term syndrome already implies an illness or disorder of some kind.
Also, to me, and here I am being disloyal to my own Anoiksis club, the word perception suggests sense data – seeing, hearing, tasting, smelling, feeling, … and does not capture the characteristic of a hallucination, let alone a delusion or any of the other, sometimes negative, symptoms.
I prefer a suggestion made several times by Jim van Os: “salience syndrome.” Salience refers to something that you don’t just see, hear etc. but which sticks out like the forward flank of an army.
When I was psychotic, titles of books lying on the table came to have a personal — sometimes sinister — meaning. The logo of a fishmonger came to have the quality of Ban the Bomb and paradoxically at the same time, a sign for another taboo word, homosexuality.
While I was driving in the direction of The Hague, the bushes by the side of the road were not just sense data, they were guiding me to an unknown destination — to me they really were!
When in the psychiatric hospital I noticed that the tooth mugs were red, the salience indicated that I was in a communist establishment and I tried to run away.
The word salience is not (yet) used in ordinary conversation. But according to the online dictionary Wordnik it is a useful word in writing. Wordnik gives over 150 examples.
But as Mary J. Strong argues in her sensible and sensitive article ‘Is there something wrong with my perception of “the Perception Syndrome”?’ in Perceptions, the glossy magazine published by Rethink in London, won’t any new word come to have the same stigma after a while?
The answer is, Yes! The only antidote is for us 95 out of 100 “syndromers” who are not violent to come out and tell what the condition is really like to live with! And that is, as Mary says, a situation fraught with difficulties.
Read the full Open Access article now: What’s in a name? Client participation, diagnosis and the DSM-5