Rethinking schizophrenia, starting with the name
Advocate Bill MacPhee calls for debate about one of the most misunderstood mental illnesses
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Not everyone would jump at the opportunity to have a mental illness named after themselves. Bill MacPhee, however, is campaigning for the honour.
Yes, he expects people will be amused, and perhaps agog, at his unusual mission to change the term schizophrenia to MacPhee Syndrome. But that doesn’t bother him.
As long as it gets them thinking and talking. And as long as it leads to more accurate information about the widely misunderstood mental illness, less fear and confusion and, in turn, better access to treatment and support for people who need it.
“I just want to put a face to it,” MacPhee, 52, says.
MacPhee was diagnosed at 24 and has felt the impact of people’s alarm and judgment both personally and professionally. The brain disease, which affects one in 100 people, causes profound disruption in thinking and perception and often includes psychotic experiences such as hearing voices or hallucinating. But it is treatable and people who get the appropriate medication and support, like MacPhee, can lead meaningful and productive lives.
“I’ve been trying to break the stigma for 20 years and give people the facts,” says MacPhee, of Fort Erie. That’s when he began publishing a quarterly magazine about schizophrenia for those with the brain disorder, their families and people in the medical and mental health fields.
“But the great wall is not coming down. It’s time to change tactics.”
When subscribers reported fearful and negative reactions from neighbours and friends who spotted their copies of Schizophrenia Digest, he changed the name of the quarterly to SZ Magazine.
The notion of renaming schizophrenia to break free of the common myths — namely that people with schizophrenia are likely to be violent, have multiple personalities and can’t work — isn’t new. Ten years ago, Japan’s Society of Psychiatry and Neurology changed its previous term for the disorder from “mind-split disease,” to a new name that means “integration disorder.”
In the Netherlands, there’s a movement underway to rename it “psychosis susceptibility syndrome.” And there has been discussion in the U.S. about the term “salience syndrome” as an alternative.
But MacPhee figures naming the mental illness after himself will put a face on the condition and provide an example of someone who can thrive while living with the illness.
There has been little research into whether changing the name of a condition like schizophrenia would result in more people coming forward to seek help.
Name changes do happen, though it can take many years and often the official international manual, the Diagnostic and Statistical Manual (DSM), lags behind what happens in daily practice in the field. Manic-depression eventually became bipolar disorder. The term “mental retardation” was officially changed to “intellectual disability” in the most recent edition, the DSM-5, in 2013.
But MacPhee’s move is bound to provoke strong reactions from those who agree and others who feel attention would be better focused on research and access to treatment.
Regardless, the campaign “is a clever way of bringing forward a conversation that needs to happen,” says Sean Kidd, head of psychology service in the schizophrenia program at the Centre for Addiction and Mental Health (CAMH).
He notes the brain disorder covers a wide spectrum of symptoms and ranges in severity. Referring to it as a syndrome would reflect that.
Universal language is necessary for accessing treatment programs and disability insurance benefits. But terms can backfire when they come with too many negative associations, discouraging people with symptoms and their families from seeking help.
“Schizophrenia is one of the most problematic labels,” says Kidd. “It makes people afraid, and that has some very real impact on their lives.”
The Schizophrenia Society of Ontario also welcomes the discussion, though not necessarily MacPhee’s proposed new name.
“We’re in full agreement (with the debate) because we’ve seen the stigma and experience it on a daily basis,” says CEO Mary Alberti. “I think a name change would impact the dynamic.”
Finding corporate donors is a hard sell, even though many have stepped up for illnesses like depression. And while celebrities and sports stars have gone public about their own experiences with depression, they’ve yet to put a face on schizophrenia.
That’s where MacPhee says he wants to come in.
“I’m a textbook case,” he says. He struggled for five years to come to terms with taking medication, going off it only to have his psychosis return. He once attempted suicide, was hospitalized six times and lived in three group homes.
But like thousands of others, he found treatment that worked and has built a fulfilling life.
“I’m married, I have children, I volunteer in the community,” says MacPhee, who recently celebrated his 15th wedding anniversary.
That’s a story he wants people to come across when they Google the disorder. Not just sensationalized tales of people hearing voices and committing violence.
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