SOCIETY COMES TO GRIPS WITH A DEVASTATING DISORDER
The first serious bout was back in 1963, when he was attending Queen’s University and, just before final exams, locked himself in his dorm room for two weeks. The next came seven years later, when he was Vancouver bureau
chief for The Globe and Mail: he dismantled the bell on his office and home telephones (“So no one could reach me, but I could still dial out,” he recalls), and spent his days playing tennis and walking under the Burrard Street Bridge, contemplating suicide. The last time it happened, in September, 1993, it made the veteran journalist and seeming bon vivant the talk of Toronto media circles: what happened to Joey Slinger? After 14 years of writing a four-times-weekly humor column in The Toronto Star, Canada’s I a rgest-c i re u I at i o n newspaper, Slinger suddenly disappeared. Rumors abounded about how he quit in a huff, about him working as a clerk in a downtown bookstore—both true, it turns out. But what few of Slinger’s readers and acquaintances suspected was that, behind his evaporation from the Star’s pages lay a disease with which he has struggled for much of his life. “Every now and then, I have what used to be called a nervous breakdown,” says Slinger, 54. “Now, it’s called depression.”
That, thankfully, is not as shocking an admission as it once was. In the nearly 10 years since the release of Prozac—the first and most publicized of the so-called SSRI (for selective serotonin reuptake inhibitor) family of drugs—there has been a revolution in the treatment of depression, and in the way many people think about it. Even well into the 1970s, depression was primarily considered a character flaw or a result of poor upbringing, to be treated with Freudian on-the-couch psychoanalysis. Now, researchers are approaching a deeper understanding of how depression affects the brain, and of its potential physical and genetic underpinnings (page 60). At the same time, a revolution of a different sort has begun among sufferers, fuelled in part by the recent public admissions of celebrities—among them, U.S. media mogul Ted Turner, 60 Minutes co-host Mike Wallace, Canadian actress Margot Kidder and singer-poet Leonard Cohen—that they, too, have mood disorders. There is a new openness about the condition, and an increasing recognition of its economic costs, as
employers and insurance companies grapple with a boom in disability claims and absenteeism due to depression (page 58). And today more than ever, sufferers can find support in their communities, as hundreds of self-help groups have sprung up across Canada, allowing them to talk about their illnesses and the challenges they face in an open, sympathetic atmosphere.
Finally, depression is coming out of the closet. But it still has a long way to go. The statistics on depression make the old saw about misery loving company seem like a cruel joke. More than 24 million people worldwide now take Prozac, just one of the five SSRIs. By conservative estimates, more than one million Canadians every year will suffer from any one of about a dozen depressive disorders, ranging from dysthymia (low-grade, chronic depression) to so-called bipolar affective disorder or manic depression, which causes radical mood swings between emotional highs and the depths of despair. In fact, many doctors who treat depression think there is more of it around, although some say it just seems so because the illness is being recognized and treated more often than in the past. Still, theories abound about why depression might be spreading. Some experts blame high levels of stress in industrialized societies, or suspect that environmental chemicals may be to blame. “People cite the divorce rate, the decline in religion, the role of television,” says Dr. Jane Garland, director of the mood disorders clinic at the British Columbia Children’s Hospital in Vancouver. “Take your pick.”
The tragedy of depression is compounded by the fact that it remains widely misunderstood. True, everyone gets the blues. And the classic symptoms are well-known: loneliness, feelings of inadequacy, worthlessness, anxiety, a longing for death. But anyone who has been spared the experience of what Winston Churchill—another famous depressive— called his “black dog” cannot fully grasp the anguish depression brings. It is simply “hell on wheels, emotionally terrorizing,” says one manic-depressive, who asked not to be identified. "That’s why people kill themselves, and unless you’ve experienced it, you cannot imagine.”
Slinger’s last bout of severe depression began several weeks before his “disappearance.” Professionally, he recalls, he had hit “a really bad spell of the dries, like bone grinding against bone. I would find myself sitting at the word processor crying, and I thought, ‘This is terrible, I’m gonna electrocute myself.’ ” In September, 1993, he went on a canoeing trip in the Northern Ontario wilderness of Temagami—and decided to pack in his career, calling his boss from a pay phone. Luckily, then-managing editor Lou Clancy and editor John Honderich gave Slinger a year’s leave-of-absence rather than accepting his resignation. In that time, he wrote a book on bird-watching, worked part time at a bookstore, and started taking Luvox, one of the SSRI drugs. “It was wonderful,” he says. ‘To me, it’s a miracle drug.” Slinger returned to writing his column in 1994, and now says he takes Luvox only when he feels a depressive episode coming on. “The key to me is that I start thinking about suicide,” he explains. “It becomes, all of a sudden and bizarrely, among the things I might do today—‘I might get a haircut, I might go to a movie, I might kill myself.’ ” But after 30 years of on-again, off-again depression—and with an effective treatment in hand—Slinger says he has learned to accept his disorder, and to live with it. “I’m satisfied this is something that just happens to people, like diabetes.”
Thousands of others, however, are not so fortunate. Many with depressive disorders struggle for years—and often for their whole lives—to find the right balance of drug therapy, counselling and community support to help make their illnesses manageable. That runs counter to the popular notion about Prozac and other antidepressants which, given all the media attention paid them over the past decade, might be mistaken as a cure for depression. “The new medications have made a spectacular difference,” says William Ashdown, a depressive himself and president of the Winnipeg-based Mood Disorders Association of Canada, a public-education and self-help organization. “But there’s no rhyme or reason to these diseases, and that’s a tremendous challenge for some people. They’re looking for a cookie-cutter illness, and there’s just no such thing.” In the vast majority of cases, treatment of depression does work: doctors concur that up to 90 per cent of people with depressive disorders will respond to therapy. The irony is that depression is so rarely treated: experts estimate that only one-third of sufferers receive appropriate therapy. Misdiagnosis or lack of treatment is particularly acute among the elderly. According to researchers, only a quarter of people over 65 who have severe depression are adequately treated. The reasons are complex. Physical ailments can mask symptoms of depression—often confused, in turn, with Alzheimer’s disease—and
that can make it difficult to diagnose. But there are Ashdownsocial factors, too, and an incipient belief, even in the medical community, that depression is simply a fact numan society of life for the elderly. Another problem, says Dr. Cestill harbors sar Garcia, a geriatric psychiatrist at York County an antipathy Hospital in Newmarket, Ont., is that many elderly jowart|s patients are uncomfortable talking about emotional problems. “There’s a real stigma for that age group mentally ill about psychiatry and about depression,” he says.
Depression comes in many forms, but the one thing that sufferers young and old confront is the stigma, the fear or outright antipathy still directed at the mentally ill. It prevents many from seeking help in the first place. And it can make sufferers—even those receiving proper treatment—lead a double life. Wendy, a community outreach worker in western Canada in her mid-50s, has lived with bipolar disorder for much of her adulthood. Her first bout of severe depression occurred at 19, when she stopped eating and lost 35 lb., stopped sleeping and had repeated thoughts of suicide. At the time, her doctor sus-
pected she was pregnant. “And I said to him, ‘Pregnant? I haven’t even looked at a boy.’ ” Times have changed. And now, Wendy—who has been responding well to treatment for the past 13 years—is “living a good life.” In her job, she gives support to other people with depressive disorders. She is frank about her illness—but not with everyone. In fact, like most sufferers, she prefers that her real name not be published; she does not even want her home town identified. And she still keeps two résumés on file, one (which she used to get her current job) that describes her condition, and one that does not. “I’ve accepted my illness, and encourage others to do that, too,” says Wendy. “But not everyone accepts this—it could be held against me some day.”
Most sufferers are not receiving proper therapy
As a social problem, depression is devastating in its economic and personal consequences. The national mood disorders association estimates that direct and indirect medical costs of depression in Canada top $5 billion a year, and depression in the workplace is proving an enormous burden to insurers and to businesses: absenteeism due to the illness costs Canadian companies an estimated $2.3 billion annually in retraining, restaffing and lost productivity. But that’s only money. The more telling figure: about 3,500 Canadians take their own lives every year—and another 50,000, by conservative estimates—attempt to. Although the forces behind suicide are varied, depression is believed to be responsible for between 60 and 90 per cent of those deaths.
When Doris Sommer-Rotenberg, a 71-year-old writer, poet and jewelry designer, talks about her son Arthur, she knows she sounds like a doting mother. “But he was a remarkable young man,” she explains. “He was a doctor, a wonderful athlete—he had everything. But he also had this dreadful illness.” The illness was bipolar disorder, or manic-depression, diagnosed at the age of 17. When he was well, his mother recalls, he “was great fun, and had such a love of life.” But in 1992, Arthur suffered a deep depression. Doris Sommer-Rotenberg says she did not understand the significance of a visit he paid to her that fall at her downtown Toronto home. “In retrospect,” she says, “I think he came to say goodbye.”
Five years ago this November, 36-year-old Arthur took his own life. But his mother was not content to let her son become a statistic. Last January, the University of Toronto—matching the $1 million she helped to raise through private and corporate donations—established the Arthur Sommer-Rotenberg Chair in Suicide Studies, the first of its kind in North America, and chose psychiatrist Dr. Paul Links, an authority on suicide’s causes and prevention, as the first incumbent. For SommerRotenberg, the chair is a way of keeping her son’s spirit alive. And although suicide among people with bipolar disorder is startlingly common, with a rate of about 25 per cent, she believes that deaths like her son’s could be prevented with more understanding and research. “Some doctors might say no,” she says. “But I think any suicide is preventable. I have to.”
HELP IN HARD TIMES
Canadians suffering from depression and manic-depression operate organizations in seven provinces, offering support groups and providing education and peer counselling. Canadians outside those areas can contact the Winnipeg-based Depression and ManicDepression Association of Canada at (204) 786-0987. The provincial bodies are:
• The Mood Disorders Association of British Columbia: (604)873-0103
• The Depression and Manic-Depression Association of Alberta: (888) 757-7077
• The Society for Depression and ManicDepression in Saskatchewan: (306) 966-8261
• The Society for Depression and ManicDepression of Manitoba Inc.: (204) 786-0987
• The Mood Disorders Association of Ontario: (416) 943-0434
• The Mood Disorders Association of Metropolitan Toronto: (416) 486-8046
• The Quebec Association of Depression and Manic-Depression: (514) 529-7552
• The Depressive and Manic-Depressive Society of Nova Scotia: (902) 539-7179
mong people with depression, it is a common refrain—the sense of being alone. “Friends .and family try to be supportive, but at a certain point it is hard for them to help or know what to say,” says Sara, a 33-year-old freelance writer in Montreal who suffers from dysthymia.
“When someone compliments me, it doesn’t sink in—they might as well be talking about the weather.” Often, too, advice given with the best intentions can do more harm than good. “Some people say, Why don’t you get out of bed, snap out of it? You’ve got a good job and a lovely home—just get on with it,’ ” says Wendy in western Canada. “But if we could do that, wouldn’t we?” Just two decades ago, there were few places for people with depressive disorders to turn for support—besides family, friends or psychotherapists. But that is changing. In early 1983, five men and women in Winnipeg—including Ashdown’s ex-wife—got together to discuss their illnesses at the prompting of their psychiatrist, Dr. Jim Brown. So began the Society for Depression and Manic-Depression of Manitoba, the oldest self-help group for mood-disorders sufferers in the country. From it sprang a host of other groups, in a wave that can only be described as a self-help revolution. Today, there is a national association, regional organizations in every province except New Brunswick, Prince Edward Island and Newfoundland (plans are under way to start them there, too), and as many as 800 other support groups scattered across the country, from small towns to major cities. Collectively, the self-help groups provide information to people with depressive disorders and their families. Ashdown says the Manitoba office fields about 5,000 telephone calls, holds 150 highschool information sessions, and has some 500 self-help meetings every year. Part of the organizations’ function, he adds, is to educate the public about depression, and do what they can to counter the lingering stigma. But their central role is to provide support to people who are confused, frightened or ashamed by their illnesses. “An individual goes to a doctor, gets treated, usually gets little or no explanation of what it means to him, and is then left alone to face the fact that he is now designated as a mental patient,” says Ashdown, 46. “Selfhelp organizations fill a huge gap.”
To the volunteers who work for self-help groups, they can also provide a sense of purpose. Eva, from Thornhill, is 50 now. But she has struggled with her disease since she was 17, when she was an A student, pretty, with plenty of boyfriends—and suddenly “began to feel so, so sad.” At 19, she became seriously depressed, and was hospitalized for six weeks. Diagnosed with bipolar disorder 10 years later, she has experienced it all: the medication (she has taken lithium for 21 years, now combined with another mood stabilizer, Tegratol), the cost to her personal life (her first marriage ended in divorce after five years, when she was 23), and the pervasive misconceptions of people around her, even her parents. “I’m still told by my parents that I’m not depressed, I’m lazy,” Eva says. “That hurts.”
Despite all the obstacles, however, Eva is coping. A big part of that, she says, is her work with the Mood Disorders Association of Metro Toronto where for 10 years she has volunteered as a facilitator for twice-monthly selfhelp meetings, attended by sufferers and their families. The diseases vary, from dysthymia and major recurring depression to bipolar disorder, but common themes arise: problems with work, medications, doctors and spouses. “It’s not people talking down to you, or who have just read something in a book,” says Eva. “It’s people who have been there.” Educating other sufferers’ families, she stresses, is important. “I felt there was not much I could do in my own situation, so I tried to do it for others,” she says, “ft feels good when people say, Thank you.’ ”
In many ways, Eva’s is a good-news story. In person, she is warm and funny, with a sparkling intelligence. She has had a successful career and raised two children, who she says are very supportive and informed about her illness. And she has achieved a delicate balance of drugs, psychotherapy and selfhelp: for the seven years since her last bout of depression, her mood has been stable. In that time, she divorced her second husband, sold her house and moved into a condominium, and underwent major surgery on her hip. Now, she is planning to begin a new career as an events planner, and she has started dating again—a nerve-racking experience for any 50-year-old. But Eva is nothing if not determined. “I’ve had times in my life when I’ve felt like a little child,” she says. “But I don’t want to depend on anybody, on my children or on my parents. I want to depend on myself.” Given the anguish she has endured, that is a courageous stand. And proof that, while the war against depression is far from over, those who struggle with the disease can still achieve something significant: a life worth living. □