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"Capital Health article and interview with Austin on schizophrenia:  www.capitalhealth.ca/AboutUs/ResourceLibrary/YourHealthMagazine/MayJune2007/schizoprenia.htm  "

The Schizophrenia Stigma

People with schizophrenia are proving that this diagnosis doesn't mean a lifetime in the psychiatric ward

Man in Mirror
Shortly after returning from an overseas trip 14 years ago, Austin Mardon's life began to fall apart. He failed his PhD exam. His girlfriend turned down his marriage proposal. For weeks, he wandered the streets of Edmonton in an incoherent haze. He thought he was telepathic. He thought he was a werewolf. He thought some people were special, like him, that they, too, were werewolves. When he spoke, he made no sense.

Rejection is hard on anyone, but Mardon's reaction was extreme, and when he was finally admitted to a hospital psychiatric ward, the diagnosis came swiftly: at age 30, Mardon was told that he had schizophrenia.

"I started crying uncontrollably when they brought me in, even though I was completely out of it from my psychosis," he says. "I knew enough to know what it meant. I thought 'my life is over because I'm in a psych ward.'"

Most patients and their families have a similar reaction when they hear a diagnosis of schizophrenia. "It terrifies people," says Dr. Pierre Chue, a psychiatrist who treats many patients who have the illness. "It conjures up the image of a street person shouting to himself, in his own world, and schizophrenia patients don't see themselves like that. As far as they're concerned, their symptoms are real."

Schizophrenia is a chronic, debilitating mental illness caused by impaired connections in the brain. It has nothing to do with multiple personalities. Until the early 20th century, the illness was known as dementia praecox, or premature dementia.

Symptoms can be described as positive and negative. Positive symptoms include delusions, disordered thinking, paranoia and hallucinations that can involve any of the five senses. A person with schizophrenia may see things, feel things or taste things that don't exist. The most common hallucinations are auditory – hearing voices.

Negative symptoms describe qualities that are lost or diminished. Patients can lack motivation, interest and the ability to experience pleasure.

Antipsychotic drugs, including Clozaril, Risperdal, Zyprexa and Seroquel, are used to treat positive symptoms. There are different degrees of schizophrenia and everyone responds individually to medication. Some patients must try different medications before finding one that works. In some people, antipsychotic medications will decrease or eradicate the positive symptoms, but that doesn't mean drugs are a cure. Schizophrenia is a chronic illness. Treatment means an ongoing combination of medication and non-pharmaceutical therapies and programs.

One of the biggest challenges facing doctors who treat people with schizophrenia is convincing them that they need to start and continue medical care and therapy.

"To them, [positive symptoms are] completely real," says Dr. Chue. He recalls a patient who was convinced that his parents were cutting off parts of his body while he was sleeping, and then putting them in his food so that when he ate, he was actually eating himself. Horrified, he couldn't understand how his parents could do such a thing. Eventually he was admitted to a psychiatric ward for treatment.

The psychotic break that led to Mardon's diagnosis was triggered by stress. And while stress can trigger an episode, it's important to understand that it doesn't cause schizophrenia.

 The cause is unknown. There is what Dr. Chue calls a "genetic vulnerability" – if someone in your family has the illness, your risk increases. Other possible risk factors include viruses, malnutrition in the womb or birth trauma. And while drugs don't cause schizophrenia, using street drugs increases the risk about five-fold.

The connections in the brain that are compromised by schizophrenia are made in utero and adjusted by the body up to and during puberty. If the brain is exposed to drugs between ages 12 and 20, when it's finalizing the connections, anything that interferes with it can contribute to schizophrenia. "Even drugs that are considered innocuous, like cannabis," says Chue. The risk is between two and 10 times greater for cannabis (pot) users.

Schizophrenia is typically diagnosed in males between the ages of 15 and 25. Mardon's diagnosis came relatively late, although he says he had emotional problems earlier in life, among them difficulty socializing and interpreting body language.

In females, the diagnosis usually comes between the ages of 25 and 35. The illness is more common in males and, according to Chue, is easier to diagnose because men don't have as many affective or mood disorders as women.

Cathy Reaney-Liddle's daughter, Lori, was diagnosed 18 years ago with bipolar disorder. She was 23 at the time and her father had just died. An honours student and talented writer, she was living on her own. Reaney-Liddle didn't see Lori every day, and attributed her personality change – she'd stopped taking care of herself, stopped paying her bills – to grief. "The last thing you think of is mental illness when a person has been fine all their life, and very smart, and doing all kinds of things,"Reaney-Liddle says. "You think it's a stage."

Several years later, doctors changed Lori's diagnosis to schizophrenia. She had become paranoid. She said Reaney-Liddle wasn't her mother. Because Lori didn't realize she was sick, Reaney-Liddle sought a court order to have her hospitalized.

Lori was in hospital for six months. On her release, she moved into a group home. Now 41, she lives with her boyfriend, who also has schizophrenia. Both women have become active in the Schizophrenia Society of Alberta. Reaney-Liddle is the coordinator of partnership and support programs and Lori does occasional presentations.

"I felt like a terrible mother when I went to court to get her put into the hospital. But because she was so sick it was the best thing that could have happened," Reaney-Liddle recalls. "It's like sending someone to the oncology ward when they have cancer."

Treatment is crucial, and the earlier it starts the better. In addition to taking anti-psychotics, people with schizophrenia may need to take medication to counter side effects and control anxiety or depression. Patients also need psychosocial, academic and vocational support and family therapy. Coping with stress is crucial, as is making sure patients get addiction therapy, if necessary, to keep them away from alcohol and street drugs.

"It's an ongoing, tailored education that teaches families and patients how to manage the illness and how to get the best out of their treatment, and it all has to be combined," Chue says. "Meds on their own aren't going to work." Schizophrenia is isolating in part because those who suffer from it are often afraid to go out in public, and because the public may be afraid of them. Until the Academy Award-winning 2001 film A Beautiful Mind told the true story of Nobel Prize-winning mathematician John Nash, the general pop culture perception was that all individuals with schizophrenia were knife-wielding maniacs with multiple personalities.

"The average person with schizophrenia would make the most boring movie subject you could ever imagine. Hollywood prefers to find the extremely rare circumstance where an individual may do something horrible," says Jill Kelland, Capital Health's manager of Social and Vocational Programs for Regional Mental Health.

One reason schizophrenia is so debilitating is that it's usually diagnosed at a time in life when young people are developing the skills they need to become independent adults. The hallucinations, delusions, and paranoia that mark the illness make it difficult to study, hold down jobs or maintain relationships. People with schizophrenia may retreat to their parents' basements or have repeated stays in hospitals. Some become homeless.

"We find that clients referred to our programs and services may be 30 to 35 and have their first boyfriend, girlfriend or first job," Kelland says. "All those things are put on hold until they're okay mentally."

It's a long process. But family members and those with schizophrenia can turn to the Schizophrenia Society of Alberta for help. The society provides information, support and advocacy for families and patients living with schizophrenia and other severe mental illnesses. They can help with issues including housing, access to complimentary treatments and therapists. They also run support groups.

"What we try to do is make the lives of the family members a little less difficult and a little less confusing," says Giri Puligandla, executive director of the society's Edmonton chapter. "A key principle is mutual aid or, as we call it, peer support."

That support starts with the person who answers the society's phones: Cathy Reaney-Liddle. "She can give callers practical advice," Puligandla says. "We believe that people who've been through the experience are the best for families just starting the journey to talk to and we believe the same thing about people living with mental illness. You can have a million psychiatrists and family members telling someone they need to stay on meds and take it a day at a time, but it really takes just one peer to do the same."

Or one very convincing family member, as Mardon learned when he was diagnosed and didn't want to take his medication. ("I thought it was poisonous," he says.) His father came to Edmonton from Lethbridge to convince him. Once Mardon agreed to the medication, he became that rarest of individuals with schizophrenia: one of the 5% who is compliant. He's missed his meds 14 times during the past 14 years, and only then because he's fallen asleep and woken up too late to take the dose.

In addition to an anti-psychotic drug, Mardon takes medication for depression and for his thyroid, which his doctors suspect was damaged by the different medications. The anti-psychotic drugs have slowed his metabolism, causing him to gain weight, and he takes medication for hypertension.

Many people with schizophrenia take other meds to counteract side effects. Some opt not to take medications at all. Mardon recalls a woman with whom he used to run support groups for people with schizophrenia. "She went off her meds," he recalls. "She didn't want to gain weight. Now she's homeless and wandering the streets in a daze."

There's no judgment in his voice when he speaks of his friend, only sadness. Mardon, too, faced enormous changes when he was diagnosed. He was still looking forward to a successful academic career. He'd published articles in scientific journals, and he and his father were collaborating on a book about French politicians in Alberta. Going to work full time meant stress, which could lead to another psychotic episode.

Finding work when you have schizophrenia is a challenge, which is why programs such as the one that Kelland manages for Capital Health are an important part of the treatment process. In addition to employment specialists, staff members include recreational and occupational therapists who are devoted to helping people move back into the wider world.

Recreational therapists help patients figure out "what do you do for fun, and how can we help you get those things back into your life?" says Kelland, a former recreational therapist herself. The recreational therapist's duties are varied, and may include helping patients with such basic tasks as determining if they have the right exercise equipment, and then accompanying them to the workout facility.

"Clients might be quite intimidated to walk into the Kinsman Recreational Centre to work out, but if we go with them, it's a less scary thing to do," Kelland says.

Occupational therapists help with areas relating to work and daily functioning. They will also work with the supported employment specialists who help the clients to put together a résumé and find work. Kelland has a list of area employers, among them Sobeys and Safeway, who hire people with mental illness. "It's certainly not hard in today's labour market," she says. "That's been the glory of this booming economy."

Employment specialists will accompany workers to the job site for a few weeks to help them learn how to get along with colleagues, where to take coffee breaks and generally ease into the job, gradually reducing their influence until they are fully independent.

In the past, job options for people with mental illness were limited. Programs such as the one that Kelland manages ran primarily sheltered workshops, where people did simple work and weren't competitively compensated. That's changed, in part because medications have improved and people who might have spent much of their time in institutions can function better, and in part because society has become more aware and accepting.

"The functioning levels and intellect of our clients is truly representative of the entire population," Kelland says, adding that one myth her program works hard to overcome is that people with schizophrenia can only do front-line, entry-level, repetitive work.

Employers are often pleasantly surprised when they hire people from Kelland's program. "Our clients tend to be a stable work force," she says. "If the job is a good fit, they're going to be solid, long-term people. They want to work and be there for you. I think the more people we place, the more word gets out, and that builds our resource base for the community."

Not everyone with schizophrenia takes a paying job. Some are constrained by their illness, others by the parameters set out by a program called Assured Income for the Severely Handicapped. Mardon, who had planned a career in the high-pressure world of academia, opted for the volunteer sector.

Since he was diagnosed and treated, Mardon has made invaluable contributions to the mental health community in Edmonton, which he says would not have been possible had he not taken the crucial first step of accepting his illness. "If you don't, you won't cooperate with the medications. You're going to continually go into a cycle of denial and get sick over and over," he says.

Mardon has no illusions that he's healed. Every couple of days he has hallucinations. Sometimes he sees things; more often he hears voices. He still has trouble with hygiene and reading body language. He still says inappropriate things. But he's managed to keep doing research, to keep writing – he's written dozens of books – and to get married.

In March, he celebrated the publication of the book that he and his father were working on when he was first diagnosed with schizophrenia, French Canadians in the Political Life of the Province of Alberta (1891-2005).

He helped start a self-help group for people with schizophrenia and one for those with the added burden of addictions. He has served on the board of directors for both the Edmonton and Alberta chapters of the Schizophrenia Society of Alberta. For more than 10 years he was co-chair of Unsung Heroes, a self-support group for people with schizophrenia.

Among the awards he has won are the Governor General's Caring Canadian Award in 1998, the Queen Elizabeth II Golden Jubilee Medal in 2002 and the Alberta Centennial Medal in 2005. In February he learned that he had been named to the Order of Canada.

"Whatever their disability, people wish to make a contribution, to make a difference in society in some meaningful way, to have a structure to their life, whether it's volunteering at a non-profit or having a part-time job where they don't get penalized," Mardon says. "Most people with schizophrenia want friends, people who don't laugh at them and aren't afraid of them. If they had that, they could feel like human beings, rather than how they usually feel."

Resource Room

Many people with schizophrenia rely on funding from a provincial program called Assured Income for the Severely Handicapped (AISH). The program is open to anyone whose ability to earn a living is substantially limited because of a permanent disability. Medical documentation is required to support the application.

The maximum benefit is $1,000 a month and is affected by whether the recipient has a partner who can earn a living, whether the recipient is earning any part-time income and the number of assets owned by the recipient or his or her partner.



Austin Mardon, CM
Telephone: 1-780-378-0063
Post Office Box 1223, Main Post Office,
Edmonton, Alberta, CANADA,
T5J 2M4
Email: aamardon@yahoo.ca
Web site: www.austinmardon.org