In this way we can tackle inaccurate and often sensational reporting by journalists and editors working for newspapers, radio and television.

We need to emphasize that some of us — but not all — are on a recovery route, although for the large majority a complete recovery is not attainable.

Some of us take our medicines faithfully; some of us do not need to; and some of us who do need to, do not take them: maybe they have been frightened off by a stigmatized label. Labels can be dangerous and we need to be careful with them!

Some patients do not take their medications because they refuse to comply with what they experience as the authoritarian tone of a stern psychiatrist. Adherence to one’s prescriptions will be greatly encouraged by a gentler, less pathological-sounding name for what is not a specific illness anyway, but has the nature of a syndrome. We need a name that is not misleading and does not borrow the stigma of an earlier era.

The availability of modern antipsychotic medicines has made a difference for those who have been seriously ill — as I have been on several occasions. The schizophrenia concept was developed at a time when less was known about the condition, and when treatment methods were even more crude and hit-and-miss than they are now.

Modern medicines do not just sedate the patient, but help him or her to have a better sense of reality. Some antipsychotics are not even sedatives but actually stimulating – the art is to achieve the right balance. In my case this is done by combining half a dose of a sedating antipsychotic with half a dose of a stimulating one.

Recovery from a psychotic state is possible and is achieved by most patients: there remains a weakness like a broken bone which has mended but is susceptible to strains.

Many patients, like me, take the medicines: I have found by bitter experience I need them. I have stopped taking my medicines several times and have each time had to be re-admitted. After resuming treatment and after recovering over a period of weeks and months I have been able to function moderately — but only moderately — well. I am still over-suspicious and tend to second-guess other people’s intentions and motives.

My handicap is not just due to the label. I am aware that if I had not had an Achilles heel I would have had an even more successful career than I have in fact had: I would have been an acquisition editor instead of what was described at a publisher’s party in my presence as a ‘mere’ desk-editor.

To be better understood, we need to explain from the point of view of the consumer precisely what one might, for want of a more colloquial, conversational but accurate alternative, call ‘aberrant salience’, in which salient details stick out in an inappropriate manner – the fact that when I saw red tooth mugs in the mental hospital this told me it was a communist establishment; that when I saw the bushes by the side of the road they were showing me the way to go; the fact that when I saw the logo outside the fishmonger’s shop I saw something that was not there…..

‘Aberrant salience’ would be the certainty that the voices on the radio are speaking to me; that I was personally involved in the 1980s in the cold war between communism and capitalism and paradoxically, at the same time, with Roman Catholicism; that the thoughts in my head were put there by three computers; or, during an earlier psychosis, by the hypnotism of my tutor. The thoughts were not about hurting other people, but about self-harm, about driving my car into the river, for example; and that I was a sort of latter-day Jesus Christ.

Most patients who have been diagnosed with schizophrenia are in remission, not in a state of psychosis. And sometimes people are wrongly diagnosed, for instance when people experience hallucinations without being ill as a result.

There are people who hear voices when there is no radio etc. who are not sick; people who have strange, waking, dreamlike experiences who are not in need of care and attention by mental health services.

This is a continuum with the general population with frankly sane at one end and honestly crazy at the other. As with most things there are various shades of grey in the middle, although that does not mean to say there is no black and white at the extremes.

The stigma is unfair because those of us who have been diagnosed with the inaccurate, derogatory diagnosis of schizophrenia are not all in the same boat. And the problem is made worse by the fact that the same boat they are unwisely trying to put us in is a boat that has holes in it.

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