Anatomy of an Epidemic (5 page)

That was the year she went on SSDI. Seventeen years after her initial manic episode, she had officially become disabled by bipolar disorder. “I hate it,” she says. “I am a Wellesley girl on welfare, and
that’s not what Wellesley girls are supposed to do. It is so corrosive to your self-esteem.”

As might be guessed, given that she arrived at the diner on a bicycle, having pedaled there during her lunch break at work, Monica’s life eventually took a turn for the better. In 2006, she stopped taking an antidepressant, and that triggered a “dramatic change.” Her depression lifted, and she began working part-time at the Transformation Center, a Boston peer-run organization that helps people with psychiatric diagnoses. Although the lithium she has continued to take has its drawbacks—“my ability to create artwork is gone,” she says—it hasn’t exacted too great a physical toll. While she has a thyroid problem and suffers from tremors, her kidneys are fine. “I’m in recovery now,” she says, and as we get up to leave the diner, she makes it clear that she would like to secure a full-time job and get off SSDI. “Being on welfare is a phase in my life,” she says emphatically, “not an end.”

Such has been the long arc of her illness. As a clinical study, her story appears to tell simply of the benefits of lithium. That drug apparently kept her mania in check for decades, and as a mono therapy, it has helped keep her stable since 2006. Still, after years of drug treatment, she ended up on SSDI, and as such, her story illustrates one of the core mysteries of this disability epidemic. How did someone so smart and accomplished end up on that governmental program? And if we wind the clock back to the spring of 1986, a perplexing question appears: Did she suffer her first manic episode because she was “bipolar,” or did the antidepressant induce the mania? Is it possible that the drug
converted
her from someone who had suffered a depressive episode into a bipolar patient, and thus put her onto a path of chronic illness? And did the subsequent use of antidepressants alter the course of her “bipolar illness,” for one reason or another, for the worse?

To put it another way, in the world of people who attend DBSA meetings, how often do they tell of becoming bipolar
after
initial treatment with an antidepressant?

If you had met Dorea Vierling-Clausen in 2002, when she was twenty-five years old, she would have told you that she was “bipolar.” She’d been so diagnosed in 1998, her psychiatrist explaining that she suffered from a chemical imbalance in the brain, and by 2002 she was on a cocktail of drugs that included an antipsychotic, Zyprexa. But by the fall of 2008, she was off all psychiatric medications (and had been for two years), she was thriving in a life that revolved around marriage, motherhood, and postdoctoral research at Massachusetts General Hospital, and she was convinced that her “bipolar” years had all been a big mistake. She believes that she was one of the millions of Americans caught up in a frenzy to diagnose the disorder, and it very nearly ended with her becoming a mental patient for life.

“I escaped by the skin of my teeth,” she says.

Dorea tells me her story while sitting in the kitchen of her condominium in Cambridge, Massachusetts. Her spouse, Angela, is here, and their two-year-old daughter is sleeping in the next room. With her freckles and slightly frizzy hair, and evident zest for life, Dorea seems like someone who might have been a bit of a mischievous child, and to a certain extent, that is how she remembers herself. “I was extremely smart, at the far end of that spectrum, and so I was the geeky kid. But I had friends. I was skillful at social navigation—I was also the funny kid.” If there was one thing amiss in her life as a child, it was that she was overly emotional, prone to “angry outbursts” and “crying” jags. “Delightful, but odd” is how she sums up her seven-year-old self.

Like many bright “odd” kids, Dorea found pursuits she excelled at. She developed a passion for the trumpet and became an accomplished musician. A top student, she had a particular talent for mathematics. In high school, she ran on the track team and had many friends. However, she remained quite emotional—that part of her personality did not go away—and there was a very real source of distress in her life: She was coming to understand that she was a lesbian. Her parents were “extremely conservative Christians,” and while she loved them and deeply admired their devotion to social
justice—her father, a physician, volunteered half of his time to work in a clinic he’d founded in Denver’s tough “Five Points” neighborhood—she feared that because of their religious beliefs, they wouldn’t accept her homosexuality. After Dorea’s freshman year at Peabody Institute, a prestigious music conservatory in Baltimore, she took a deep breath and told them her secret. “It went pretty much as awfully as could be expected,” she says. “There were tears, a gnashing of teeth. It was so desperately ingrained in their religious thinking.”

Dorea barely spoke to her parents for the next two years. She dropped out of Peabody and fell in with a punk crowd that lived in downtown Denver. The once aspiring trumpeter now ran around town with a shaved head and wearing combat boots. After working for a year at a shop that restored rugs, she enrolled at Metro State College, a commuter school. There she struggled constantly with her emotions, often crying in public, and soon she began seeing a therapist, who diagnosed her as depressed. Eventually she began to take an antidepressant, and during finals week in the spring of 1998, she found that she couldn’t sleep. When she showed up at her therapist’s office agitated and a little manic, he had a new explanation for all that bedeviled her: bipolar illness. “I was told it was chronic and that my episodes would increase in frequency, and that I would need to be on drugs for the rest of my life,” she recalls.

Although this foretold a bleak future, Dorea took comfort in the diagnosis. It explained why she was so emotional. This also was a diagnosis common to many great artists. She read Kay Jamison’s book
Touched with Fire
and thought, “I am just like all these famous writers. This is great.” She now had a new identity, and as she resumed her academic career, she arrived at each new institution—first at the University of Nebraska for an undergraduate degree and then at Boston University for a Ph.D. in math and biology—with a “giant box of pills.” The cocktail she took usually included a mood stabilizer, an antidepressant, and a benzodiazepine for anxiety, although the exact combination was always changing. One drug would make her sleepy, another would give her tremors, and none of the cocktails seemed to bring her emotional tranquility. Then, in
2001, she was put on an antipsychotic, Zyprexa, which, in a sense, worked like a charm.

“You know what?” she says today, amazed by what she is about to confess. “I loved the stuff. I felt like I finally found the answer. Because what do you know. I have no emotions. It was great. I wasn’t crying anymore.”

Although Dorea did well academically at Boston University, she still felt “really stupid” on Zyprexa. She slept ten, twelve hours a day, and like so many people on the drug, she began to blimp up, putting on thirty pounds. Angela, who had met and fallen in love with Dorea prior to her going on Zyprexa, felt a sense of loss: “She wasn’t as lively anymore, she didn’t laugh,” she says. But they both understood that Dorea needed to be on the medications, and they began organizing their lives—and their plans for the future—around her bipolar illness. They attended DBSA meetings, and they began to think that Dorea should scale back her career goals. She probably wouldn’t be able to handle the stress of postdoctoral research; her previous work in a rug shop seemed about right. “That sounds insane now,” says Angela, who is a professor of mathematics at Lesley College. “But at the time, she wasn’t a very resilient person, and she was becoming more and more dependent. I had to bear the weight of caretaking.”

Dorea’s possibilities were diminishing, and she might have continued down that path except for the fact that in 2003 she stumbled across some literature that raised questions about Zyprexa’s long-term safety and the merits of antipsychotic drugs. That led her to wean herself from that drug, and while that process was “pure hell”—she suffered terrible anxiety, severe panic attacks, paranoia, and horrible tremors—she eventually did get off that medication. She then decided to see if she could get off the benzodiazepine she was taking, Klonopin, and that turned into another horrible withdrawal experience, as she suffered such severe headaches she’d be in bed by noon. Still, she was gradually undoing her drug cocktail, and that caused her to question her bipolar diagnosis. She had first seen a therapist because she
cried too much
. There had been no mania—her sleeplessness and agitation hadn’t arisen until after she had been
placed on an antidepressant. Could she just have been a moody teenager who had some growing up to do?

“I had always thought before that I was one of those cases where the illness was clearly biological,” she says. “It couldn’t have been situational. Nothing had gone terribly wrong in my life. But then I thought, well, I came out as a lesbian, and I had no family support. Duh. That could have been kind of stressful.”

The mood stabilizers were the last to go, and on November 22, 2006, Dorea pronounced herself drug free. “It was fabulous. I was surprised to find out who I was after all these years,” she says, adding that having shed the bipolar label in her own mind, her sense of personality responsibility changed, too. “When I was ‘bipolar,’ I had an excuse for any unpredictable or unstable behavior. I had permission to behave in that way, but now I am holding myself to the same behavioral standards as everyone else, and it turns out I can meet them. This is not to say that I don’t have bad days. I do, and I may still worry more than the average Joe, but not that much more.”

Dorea’s research at Massachusetts General Hospital focuses on how vascular activity affects brain function, and given that her struggles with “mental illness” can seemingly be chalked up as a case of misdiagnosis—“I have this fantasy of being undiagnosed as bipolar,” she says—it may seem that her story is irrelevant to this book. But, in fact, her story raises a possibility that could go a long way toward explaining the epidemic of disabling mental illness in the United States. If you expand the boundaries of mental illness, which is clearly what has happened in this country during the past twenty-five years, and you treat the people so diagnosed with psychiatric medications, do you run the risk of turning an angst-ridden teenager into a lifelong mental patient? Dorea, who is an extremely smart and capable person, barely escaped going down that path. Hers is a story of a possible
iatrogenic
process at work, of an otherwise normal person being made chronically sick by diagnosis and subsequent treatment. And thus we have to wonder: Do we have a paradigm of care that can, at times,
create
mental illness?

Early during the course of my reporting for this book, I met with two families in the Syracuse area who, a few years back, had been faced with deciding whether to put their children on a psychiatric medication. The reason that I had paired these two families up in my mind was that they had come to opposite conclusions about what was best for their child, and I was curious to know what information they had at their disposal when they made their decisions.

I first went to see Gwendolyn and Sean Oates. They live on the south side of Syracuse, in a pleasant house perched on a slight hill. A gracious, biracial couple, they have two children, Nathan and Alia, and as we spoke, Nathan—who was then eight years old—spent most of the time sprawled out in the living room, drawing pictures in a sketchbook with colored pencils.

“We began to worry about him when he was three,” his mother says. “We noticed that he was hyperactive. He couldn’t sit through a meal, he couldn’t even sit down. Dinnertime consisted of him running around the table. It was the same thing in his preschool—he couldn’t sit still. He wasn’t sleeping either. It would take us until nine thirty or ten p.m. to get him down. He would be kicking and screaming. These were not normal temper tantrums.”

They first took Nathan to his pediatrician. However, she was reluctant to diagnose him, and so they took him to a psychiatrist, who quickly concluded that Nathan suffered from “attention deficit hyperactivity disorder.” His problem, the psychiatrist explained, was “chemical” in kind. Although they were nervous about putting Nathan on Ritalin—“We were going through this on our own, and we didn’t know anything about ADHD,” his mother says—kindergarten was looming, and they reasoned that it would be the best thing for him. “The hyperactivity was holding him back from learning,” his mother says. “The school didn’t even want us to send him to kindergarten, but we said, ‘No, we are going to.’ We made the decision to keep him moving forward.”

At first, there was a period of “trial and error” with the medications. Nathan was put on a high dose of Ritalin, but “he was like a
zombie,” his mother recalls. “He was calm but he didn’t move. He stared off into space.” Nathan was then switched to Concerta, a long-lasting stimulant, and he stabilized well on it. However, at some point, Nathan began to exhibit obsessive behaviors, such as refusing to step on the grass or constantly needing to have something in his hands, and he was put on Prozac to control those symptoms. While on that two-drug combo, he started having terrible “rages.” He kicked out his bedroom window during one episode, and he repeatedly threatened to kill his sister and even his mother. He was taken off the Prozac, and although his behavior improved somewhat, he continued to be quite aggressive, and he was diagnosed as suffering from both bipolar and ADHD.

“They say that ADHD and bipolar go hand in hand,” his mother says. “And now that we know that he is bipolar, too, we think he will probably be on drugs for the rest of his life.”

Since that time, Nathan has been on a drug cocktail. When I visited, he was taking Concerta in the morning, Ritalin in the afternoon, and three low doses of Risperdal—an antipsychotic—at various times during the day. This combo, his parents say, works fairly well for him. While Nathan is still moody, he doesn’t fly off into total rages, and his hostility toward his younger sister has abated. He does struggle with his schoolwork, but he is moving ahead from grade to grade, and he gets along fairly well with his classmates. The biggest worry that his parents have about the medications is that they may be stunting his growth. Nathan is smaller than his sister, even though he is three years older. However, the physician’s assistant and others who are treating Nathan don’t talk much about how the drugs may affect him over the long term. “They don’t worry about that,” his father says. “It’s helping him now.”