Anatomy of an Epidemic (3 page)

And if that is so, we will spend the final part of this book looking at what we, as a society, might do to forge a different future.

McLean Hospital in Belmont, Massachusetts, is one of the oldest mental hospitals in the United States, as it was founded in 1817, when a type of care known as moral therapy was being popularized by Quakers. Their belief was that a retreat for the mentally ill should be built in a pastoral setting, and even today the McLean campus, with its handsome brick buildings and shaded lawns, feels like an oasis. On the evening in August 2008 that I came there, in order to attend a meeting of the Depression and Bipolar Support Alliance, that sense of tranquility was heightened by the weather. It was one of the most gorgeous nights of the summer, and as I approached the cafeteria where the meeting was to be held, I figured that attendance that night would be sparse. It was just too nice of a night to be inside. This was a meeting for people living in the community, which meant they would have to leave their homes and apartments to come here, and given that the McLean group met five times a week—there was an afternoon session every Monday, Thursday, Friday, and Saturday, and an evening meeting every Wednesday—I reasoned that most people attached to the group would skip this one.

I was wrong.

There were a hundred or so people filling the cafeteria, a scene
that, in a small way, bore witness to the epidemic of disabling mental illness that has erupted in our country over the past twenty years. The Depression and Bipolar Support Alliance (DBSA) was founded in 1985 (known initially as the Depressive and Manic-Depressive Association), with this group at McLean starting up shortly after that, and today the organization counts nearly one thousand of its support groups nationwide. There are seven such groups in the Greater Boston area alone, and most—like the group that meets at McLean—offer people a chance to get together and talk several times a week. The DBSA has grown in lockstep with the epidemic.

The first hour of the meeting was given over to a talk about “flotation therapy,” and at first glance, the audience was really not identifiable—at least not by an outsider such as myself—as a patient group. The people here ranged widely in age, the youngest in their late teens and the oldest in their sixties, and although the women outnumbered the men, this gender disparity might have been expected, given that depression affects more women than men. Most in the audience were white, which perhaps reflected the fact that Belmont is an affluent town. Perhaps the one telltale sign that the meeting was for people diagnosed with a mental illness was that a fair number were overweight. People diagnosed with bipolar disorder are often prescribed an atypical antipsychotic, such as Zyprexa, and those drugs regularly cause people to put on the pounds.

After the talk ended, Steve Lappen, one of the DBSA leaders in Boston, listed the various groups that would now meet. There was one for “newcomers,” another for “family and friends,” a third for “young adults,” a fourth for “maintaining stability,” and so on, with the last of the eight choices an “observer’s group,” which Steve had organized for me.

There were nine in our group (excluding myself), and by way of introduction, everyone briefly spoke about how he or she had been doing lately—“I’ve been having a hard time” was a common refrain—and told of his or her specific diagnosis. The man to my right was a former executive who had lost his job because of his recurring depression, and as we went around the room, such life stories spilled out. A younger woman told of a troubled marriage to
a Chinese man who, because of his culture, didn’t like to talk about mental illness. Next to her, a former prosecuting attorney spoke of how he’d lost his wife two years ago, and since then “I don’t feel like I know who I am.” A woman who was an adjunct professor at an area college told of how difficult her work was at the moment, and finally, a nurse who had been recently hospitalized at McLean for depression explained what drove her to that dark place: She had the stress of caring for an ailing father, the stress of her job, and years of living with “an abusive husband.”

The one lighter moment in this round of introductions came from the oldest member of the group. He had been doing pretty well lately, and his explanation for his relative happiness was one that
Seinfield
’s George Costanza would have appreciated. “Usually the summer is a hard time for me because everybody seems so happy. But with all the rain we have been having, that hasn’t been so much the case this summer,” he said.

Over the course of the next hour, the talk jumped from topic to topic. There was a discussion of the stigma that the mentally ill face in our society, particularly in the workplace, and talk too of how family and friends, after a time, lose their empathy. This was clearly why many in the group had come—they found the shared understanding to be helpful. The issue of medication came up, and on this topic, opinions and experiences varied widely. The former executive, while still regularly suffering from depression, said that his medication did “wonders” for him and that his greatest fear was that it would “stop working.” Others told of having tried one medication after another before finding a drug regimen that provided some relief. Steve Lappen said that medications had never worked for him, while Dennis Hagler, the other DBSA leader in the meeting (who also agreed to be identified), said that a high dose of an antidepressant has made all the difference in the world in his life. The nurse told of having responded very badly to antidepressants during her recent hospitalization.

“I had an allergic reaction to five different drugs,” she said. “I am now trying one of the new atypicals [antipsychotics]. I’m hoping that will work.”

After the group sessions ended, people gathered in the cafeteria in
clutches of two and three, sharing small talk. That made for a pleasant moment; there was a feeling of social warmth in that room, and you could see that the evening had lifted the spirits of many. It was all so ordinary that this easily could have been the wrap-up moment to a PTA meeting or a church social, and as I walked to the car, it was that ordinariness that struck me most. In the observer’s group, there had been a businessman, an engineer, a historian, an attorney, a college professor, a social worker, and a nurse (the other two in the group hadn’t spoken of their work histories). Yet, as far as I could tell, only the college professor was currently employed. And that was the puzzle: The people in the observer’s group were well educated and they were all taking psychotropic medications, and yet many were so plagued by persistent depression and bipolar symptoms that they couldn’t work.

Earlier, Steve had told me that about half of the DBSA members receive either an SSI or SSDI check because they are, in the government’s eyes, disabled by their mental illness. This is the patient type that has been swelling the SSI and SSDI rolls for the past fifteen years, while the DBSA has grown into the largest mental health patient organization in the country during that time. Psychiatry now has three classes of medications it uses to treat affective disorders—antidepressants, mood stabilizers, and atypical antipsychotics—but for whatever reason, an ever greater number of people are showing up at DBSA meetings around the country, telling of their persistent and enduring struggles with depression or mania or both.

In medicine, the personal stories of patients diagnosed with a disease are known as “case studies,” and it is understood that these anecdotal accounts, while they might provide insight into a disease and the treatments for it, cannot prove whether a treatment works. Only scientific studies that look at outcomes in the aggregate can do that, and even then the picture that emerges is often a cloudy one. The reason that anecdotal accounts can’t provide such proof is that
people may have widely varying reactions to medical treatments, and that is particularly true in psychiatry. You can find people who will tell of how psychiatric medications have helped them immensely; you can find people who will tell of how the drugs have ruined their lives; and you can find people—and this seems to be the majority in my experience—who don’t know what to think. They can’t quite decide whether the drugs have helped them or not. Still, as we set out to solve this puzzle of a modern-day epidemic of disabling mental illness in the United States, anecdotal accounts can help us identify questions that we will want to see answered in our search of the scientific literature.

Here are four such life stories.

I first met Cathy Levin in 2004, not too long after I had published my first book on psychiatry,
Mad in America
. I immediately came to admire her fierce spirit. The last part of that book explored whether antipsychotic medications might be worsening the long-term course of schizophrenia (a topic that is explored in
Chapter 6
of this book), and Cathy, in some ways, objected to that thought. Although she had initially been diagnosed with bipolar disorder (in 1978), her diagnosis had later been changed to “schizoaffective,” and she had, by her own reckoning, been “saved” by an atypical antipsychotic, Risperdal. The history that I had related in
Mad in America
threatened, in some way, her own personal experience, and she called me several times to tell me how helpful that drug had been to her.

Born in 1960 in a Boston suburb, Cathy grew up in what she remembers as a “male-dominated” world. Her father, a professor at a college in the Boston area, was a veteran of World War II, and her stay-at-home mom saw such men as the “backbone of the social order.” Her two older brothers, she recalls, “bullied her,” and on more than one occasion, starting when she was quite young, several boys in her neighborhood molested her. “I cried all the time when I was a child,” she says, and often she pretended to be sick so that she wouldn’t have to go to school, preferring instead to spend her days alone in her room, reading books.

Although she did fine academically in high school, she was “a difficult teenager, hostile, angry, withdrawn.” During her second year in college, at Earlham in Richmond, Indiana, her emotional troubles worsened. She began partying with the young men on the football team, eager, she says, “to have sex” but, at the same time, worried about losing her virginity. “I was confused about being involved with a guy. I went to a lot of parties and I couldn’t concentrate anymore on my studies. I started to flunk out of school.”

Cathy was smoking a lot of marijuana, too, and soon she began acting in an eccentric manner. She borrowed other people’s clothes to wear, trekking around campus in “oversized clogs, a pair of overalls thrown over my regular clothes, a bomber jacket, and a funny hat I got from the Army-Navy store.” One night, on her way home from a party, she threw away her glasses for no reason. Her thoughts about sex gradually bloomed into a fantasy about Steve Martin, the comedian. Unable to sleep through the night, she would awaken at four a.m. and go for walks, and at times, it seemed that Steve Martin was there on campus, stalking her. “I thought he was in love with me and was running through the bushes just out of sight,” she says. “He was looking for me.”

Mania and paranoia were combining into a volatile mix. The breaking point came one evening when she threw a glass object against the wall in her dorm room. “I didn’t clean it up, but instead was walking around in it. I was, you know, taking the glass out of my feet. I was completely out of my mind.” School officials called police and she was rushed off to a hospital, and it was then, a few days before her eighteenth birthday, that Cathy’s medicated life began. She was diagnosed with manic-depressive illness, informed that she suffered from a chemical imbalance in the brain, and put on Haldol and lithium.

For the next sixteen years, Cathy cycled in and out of hospitals. She “hated the meds”—Haldol stiffened her muscles and caused her to drool, while the lithium made her depressed—and often she would abruptly stop taking them. “It feels so great to go off medication,” she says, and even now, when she remembers that feeling, she seems to get lost in the pure deliciousness of a memory from the distant past. “When you go off meds it is like taking off a wet wool
coat, which you have been wearing even though it’s a beautiful spring day, and suddenly feeling so much better, freer, nicer.” The problem was that off the drugs, she would “start to decompensate and become disorganized.”

In early 1994, she was hospitalized for the fifteenth time. She was seen as chronically mentally ill, occasionally heard voices now, had a new diagnosis (schizoaffective), and was on a cocktail of drugs: Haldol, Ativan, Tegretol, Halcion, and Cogentin, the last drug an antidote to Haldol’s nasty side effects. But after she was released that spring, a psychiatrist told her to try Risperdal, a new antipsychotic that had just been approved by the FDA. “Three weeks later, my mind was much clearer,” she says. “The voices were going away. I got off the other meds and took only this one drug. I got better. I could start to plan. I wasn’t talking to the devil anymore. Jesus and God weren’t battling it out in my head.” Her father put it this way: “Cathy is back.”

Although several studies funded by the NIMH and the British government have found that patients, on the whole, don’t do any better on Risperdal and the other atypicals than on the older antipsychotics, Cathy clearly responded very well to this new agent. She went back to school and earned a degree in radio, film, and television from the University of Maryland. In 1998, she began dating the man she lives with today, Jonathan. In 2005, she took a parttime job as editor of
Voices for Change
, a newsletter published by M-Power, a consumer group in Massachusetts, a position she held for three years. In the spring of 2008, she helped lead an M-Power campaign to get the Massachusetts legislature to pass a law that would protect the rights of psychiatric patients in emergency rooms. Still, she remains on SSDI—“I am a kept woman,” she jokes—and although there are many reasons for that, she believes that Risperdal, the very drug that has helped her so much, nevertheless has proven to be a barrier to full-time work. Although she is usually energetic by the early afternoon, Risperdal makes her so sleepy that she has trouble getting up in the morning. The other problem is that she has always had trouble getting along with other people, and Risperdal exacerbates that problem, she says. “The meds isolate you. They interfere with your empathy. There is a flatness to you,
and so you are uncomfortable with people all the time. They make it hard for you to get along. The drugs may take care of aggression and anxiety and some paranoia, those sorts of symptoms, but they don’t help with the empathy that helps you get along with people.”