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You Can Change Schizophrenia's Name, But the Stigma Will Be the Same

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Bill MacPhee, the publisher of SZ Magazine (formerly known as Schizophrenia Digest), has just launched a campaign to change the name of schizophrenia in order to, as he says, "stop stigma." The name change suggestion is not new, but what is different is his proposal to change the name to MacPhee Syndrome.

Mr. MacPhee argues, "When people hear the word 'schizophrenia' they think the worst. They research the word and find the media reference people like James Holmes the Colorado movie shooter or John Hinckley who shot president Reagan." He goes on to say that when people think of schizophrenia, they never think of someone like him. Mr. MacPhee does have schizophrenia, but he is also the publisher of Magpie Media in Fort Erie, Ont., and a man with a wife and three kids.

His campaign is using crowd source funding to try to raise $75,000 towards a North American tour kicking off April 2 in his home town of Fort Erie, petitioning The Diagnostic and Statistical Manual of Mental Disorders (DSM) and launching a letter writing campaign to encourage them to change the name in their next revision.

The name for schizophrenia was already changed in Japan in 2002. According to a description of that name change process in World Psychiatry, the old name Seishin Bunretsu Byo ("mind-split-disease") was replaced with Togo Shitcho Sho ("integration disorder"). Before that change, only 7% of doctors always told their patients diagnosed with schizophrenia that they had the disorder, while 37% only told the families and not the patients. Japan had a long history of negative attitudes towards schizophrenia and inhumane treatment to those suffering from it. Prior to 1950, schizophrenia patients in Japan were incarcerated with restraints, so it was understandable that doctors were reluctant to provide that diagnosis. After the change of name in 2004, almost 70% of patients were told their diagnosis.

I haven't been able to find any data on how well those with schizophrenia are doing in Japan as a result, although the treatment guidelines developed for the new name now recommend community-based care instead of hospitalization; a treatment plan including medication and psychosocial intervention; and therapeutic alliances with other professionals.

It would be interesting to know if as many Japanese with schizophrenia wind up untreated, homeless and in prison as is the case in North America. Our system, as a Toronto Star article on the mentally ill in jail noted, is considered medieval by experts. Criminal defence lawyer Frank Addario is quoted as saying, "It's like putting you in jail for having cancer."

In the Western Hemisphere, the term salience syndrome has been suggested as an alternative to the term schizophrenia. "Salience refers to how internal and external stimuli are consciously experienced and how, unwilled or overinclusive attention to some stimuli can become perplexing and foster a search for explanations which are later recognized as delusional" according to a 2013 published research study that attempted to see if changing schizophrenia to salience syndrome would in fact make any difference.

The study found that it would not!

One part of this study involved 161 undergraduate students at the University of Montreal. Students were told of another student called Nathan who had become withdrawn, was missing classes, looked dishevelled and was becoming paranoid. Half were told that he was diagnosed with schizophrenia and half that he was diagnosed with salience syndrome.

They were then asked to respond to the following five questions using a five-point scale, ranging from very unlikely to very likely:

1. Do you think that this would damage Nathan's career?

2. I would be comfortable if Nathan was my colleague at work?

3. I would be comfortable about inviting Nathan to a dinner party?

4. How likely do you think it would be for Nathan's girlfriend to leave him?

5. How likely do you think it would be for Nathan to get in trouble with the law?

Students showed no significant differences in their response to these questions regardless of being told the diagnosis was schizophrenia or salience syndrome.

A second study was done with 19 patients in a first episode psychosis clinic and the researchers found that "the majority of participants preferred a diagnosis of salience syndrome, considering it less stigmatizing mostly because of its novelty and the concealing potential of the new diagnostic entity, though many found it hard to relate to and somewhat difficult to understand."

As Gertrude Stein said, "a rose is a rose is a rose." Changing the name will not reduce what is.

Mr. MacPhee is to be commended for his efforts to bring awareness to these issues, but stigma exists because we are focusing on the wrong things; that is why I wondered above if many in Japan are still untreated. That, in my opinion, is the main reason for stigma. The image that the public has of those with schizophrenia is of violent, potential killers and dishevelled homeless people wandering the streets. That is who they see in public and in the news, so it is no wonder that the response is to shun all. Those who are treated are invisible because they are mostly just like us.

Mr. MacPhee and I have both been on the board of the Schizophrenia Society of Ontario, I sometimes contribute freelance articles for his magazine, and I've sat and had coffee with him. Most people would not give him a second glance if they passed him on the street, nor would they fear having a coffee with him. He would not be capable of all that he has achieved if he was not getting treatment. And that goes for many people with schizophrenia.

Evelyn Saks is a Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould Law School and she has schizophrenia. Dr. Fred Frese is associate professor of psychiatry at Northeast Ohio Medical University; clinical assistant professor at Case Western Reserve University; and coordinator of the Summit County Recovery Project. He also has schizophrenia. Dr. Carolyn Dobbins has been a practising psychotherapist for over 25 years and suffers with schizoaffective disorder.

The key to the success of these people and all who are doing well is proper treatment and that is what we fail to provide as well as we should as a society. Dr. Julio Arboleda-Florez of Queen's University in Kingston, Ontario wrote in an editorial in the Canadian Journal of Psychiatry in November 2003 that "helping persons with mental illness to limit the possibilities that they may become violent, via proper and timely treatment and management of their symptoms and preventing social situations that might lead to contextual violence, could be the single most important way to combat the stigma that affects all those with mental illness."

It is truly mind boggling that we, as a society, care so little for the suffering of those with serious mental illnesses like schizophrenia that we continue to fail to provide them with proper treatment. We ourselves stigmatize and shun those who we refuse to provide with the treatment that would relieve them of their suffering. And so, if Mr. MacPhee can help emphasize that in his campaign, then I wish him well.

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