Say “schizophrenia” and what often pops to mind are paranoid, violence-prone patients who hear voices from multiple personalities in their heads.
But many with schizophrenia say the condition isn’t anything like that and it’s time to give their illness a new image with a new name.
In such places as the Netherlands, some are already starting to use the term “dysfunctional perception syndrome” to describe the illness -- fully aware that the term “schizophrenia” carries what can be a debilitating stigma.
In Japan, the country’s Society of Psychiatry and Neurology changed its old term “mind-split disease" in 2002 to "integration disorder."
Barb Madden, a Winnipeg nurse who was diagnosed with schizophrenia in 1997, says she’d love to see a name change, because the word schizophrenia has conjured up so much fear in people.
“Schizophrenia, the whole name, it really has people thinking the absolute worst,” she says. “You do think it means being out of control all the time, and having a split personality, so you never know when the person will be strange or out of control.”
When Madden was diagnosed, she decided to tell only her family and closest friends, keeping it a secret from others.
“I didn't reveal it. I was afraid of the reprisals, the negative reactions, the stigma,” she says.
To Madden, a term like “salience syndrome" to describe episodes in which patients lose touch with reality would be an improvement.
“That is much better,” she says. “It’s so much less harsh and more straightforward and … it doesn’t put fear into people’s minds.”
Chris Summerville, the head of the Schizophrenia Society of Canada, says patients labelled with the term “schizophrenic” often face discrimination and isolation.
“As I travel across Canada, family members tend not to like the word schizophrenia. It’s such a loaded word. It has such baggage,” he says.
But others don’t believe the name should change, because to do so would diminish or minimize the seriousness of the illness, Summerville says.
The American Psychiatric Association is preparing to release the latest edition of its so-called mental health “bible” -- the Diagnostic and Statistical Manual of Mental Disorders-5 (DSM). It isn’t expected to include a name change for schoziphrenia.
But Madden says a shift is something that should be considered in the future, especially given how well other similar name changes have worked.
For example, what was once known as manic-depressive disorder is now called bipolar disorder.
Many say that term carries much less stigma, as demonstrated by the fact that celebrities such as Russell Brand and Catherine Zeta Jones have admitted they have the disorder.
Montreal psychiatrist Dr. Constantin Tranulis is not convinced such name changes do much over the long term.
"When the new name gets promoted with the public, then the stigma will just get moved to the new name,” he says.
Still, with better treatments, schizophrenia itself is changing -- and its image may change with it.
What was once a life-altering condition that often led to institutionalization can now even be put into remission after one psychotic episode with prompt treatment and medication.
Madden says her schizophrenia is under control and she lives a normal life.
“I am working and I am a nurse, and I returned to school where I obtained my bachelor of nursing,” she says. “There is life and recovery. And I am a productive, happy, successful (member) of society.”
With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip
