Public education about schizophrenia still lacking
Pete Jones was in his final year of university when he realized that something was very, very wrong. He felt deeply unhappy every single day, but that was just the beginning.
“I’d lay down on my bed and would have feelings of levitation, that somehow I was escaping from my body,” the 36-year-old North Delta resident tells the Georgia Straight by phone. “I wasn’t getting much joy at all out of life. I couldn’t experience any connection with anyone. It was very alienating and draining.”
Jones also started hearing voices, auditory hallucinations that are a telltale sign of schizophrenia. The diagnosis actually came as a relief to Jones, who has a young son; he was able to finally understand why he was having such difficulty coping with everyday life.
He went on to experience at least one psychotic episode every year up until two years ago, when he started a new medication. He isn’t able to handle the stress of working, so he considers taking care of himself—including getting regular exercise, which is said to help alleviate symptoms of the disorder—his full-time job.
Jones also volunteers with the B.C. Schizophrenia Society (BCSS), speaking to groups about what it’s like to live with the mental illness that affects one in 100, or about 40,000 British Columbians, yet remains poorly understood by the public.
“People with schizophrenia really need to be accepted,” Jones says. “The best thing a clinician has ever done for me when I’ve talked about delusions or what I’m thinking or what the voices are saying is just listen and have compassion.”
Educating people about the illness has always been a key part of the BCSS’s mandate, but it’s also one that’s taken a hit ever since Vancouver Coastal Health cut funding to the organization late last year. The cuts, which came after the funding had been in place for 20 years, led to a restructuring of the way family support is delivered and have had many positive outcomes, BCSS executive director Jane Duval emphasizes in a phone interview. But they have also resulted in a gap where public education—including that of police officers, social workers, health professionals, and other frontline workers—has fallen by the wayside.
“We’re very happy with the good work that Vancouver Coastal Health is doing,” Duval says. “But the part that’s not being done, and we’re really noticing it, is the public-education piece. They don’t have the capacity to do that. We’re trying very hard to pick that up, but we’re really feeling the loss.”
It’s no wonder that raising awareness of schizophrenia is so desperately needed when headlines talk about extreme cases of people with the illness who go on to commit some kind of violent act. In fact, with proper treatment and support, those with schizophrenia can have good lives, Duval says.
“Schizophrenia is not a simple illness,” Duval says. “Psychosis is immediately apparent, but there are a lot of cognitive signs and symptoms that are not necessarily that apparent. People with schizophrenia can be very intelligent—you’ll meet people who can play the violin or speak four languages—but they cannot organize tasks of daily living. Executive functioning is very, very affected by schizophrenia, and it may not be clear to people that someone is struggling.”
Ninety-four percent of people with schizophrenia have cognitive deficits. Aside from trouble planning, prioritizing, and organizing tasks, these also include reduced attention span and difficulties with memory, reasoning, judgment, problem-solving, and decision-making.
Cognitive abilities are more predictive of functional outcome than psychotic symptoms, according to the BCSS, yet neurocognitive deficits aren’t part of any formal diagnostic system. And while antipsychotic medications have an impact on symptoms, they don’t appear to help improve cognitive functioning.
Noticeable social withdrawal is another key feature of the illness. Other signs include deterioration of personal hygiene, depression, irrational statements, unexpected hostility, sleeping excessively or inability to sleep, decline in academic or athletic interests, forgetfulness, inability to cry or excessive crying, inappropriate laughter, and extreme preoccupation with religion or with the occult, among many others.
Men and women are equally likely to be diagnosed with schizophrenia. People usually start getting sick between the ages of 15 and 24.
“Early onset of the illness is another fact that a lot of people aren’t aware of,” says Sally Hull, BCSS coordinator of community development, by phone. “Parents often think that the onset of the illness is their teenager doing stuff on purpose. A young person may self-medicate with drugs and alcohol.
“We need to get the message out to parents to consider mental illness, not intentional bad behaviours, particularly if a young person has done well, has been an achiever, and all of a sudden falls off the rails,” she adds. “Consider this and go see your doctor. Schizophrenia should be on your list when things are not working well for a young person.”
If not diagnosed and treated, the illness can cause continued psychotic episodes that can drastically reduce a person’s quality of life. According to the BCSS: 33 percent of Canada’s homeless are mentally ill; six percent of people in jail in Canada have schizophrenia; and seven percent of all suicides in Canada are attributed to schizophrenia.
Although the disease can be devastating to people and their families, early diagnosis and proper treatment help improve outcomes. The BCSS also offers support groups and other services throughout the province.
“Once a family understands the core characteristics of the illness, they have tools they can offer,” Duval says. “With support, people with schizophrenia can live in the community safely and with dignity.”