The challenge of going off psychiatric drugs

Laura Delano recognized that she was “excellent at everything, but it didn’t mean anything,” her doctor wrote. She grew up in Greenwich, Connecticut, one of the wealthiest communities in the country. Her father is related to Franklin Delano Roosevelt, and her mother was introduced to society at a débutante ball at the Waldorf-Astoria. In eighth grade, in 1996, Laura was the class president—she ran on a platform of planting daffodils on the school’s grounds—and among the best squash players in the country. She was one of those rare proportional adolescents with a thriving social life. But she doubted whether she had a “real self underneath.”

The oldest of three sisters, Laura felt as if she were living two separate lives, one onstage and the other in the audience, reacting to an exhausting performance. She snapped at her mother, locked herself in her room, and talked about wanting to die. She had friends at school who cut themselves with razors, and she was intrigued by what seemed to be an act of defiance. She tried it, too. “The pain felt so real and raw and mine,” she said.

Her parents took her to a family therapist, who, after several months, referred her to a psychiatrist. Laura was given a diagnosis of bipolar disorder, and prescribed Depakote, a mood stabilizer that, the previous year, had been approved for treating bipolar patients. She hid the pills in a jewelry box in her closet and then washed them down the sink.

She hoped that she might discover a more authentic version of herself at Harvard, where she arrived as a freshman in 2001. Her roommate, Bree Tse, said, “Laura just blew me away—she was this golden girl, so vibrant and attentive and in tune with people.” On her first day at Harvard, Laura wandered the campus and thought, This is everything I’ve been working for. I’m finally here.

She tried out new identities. Sometimes she fashioned herself as a “fun, down-to-earth girl” who drank until early morning with boys who considered her chill. Other times, she was a postmodern nihilist, deconstructing the arbitrariness of language. “I remember talking with her a lot about surfaces,” a classmate, Patrick Bensen, said. “That was a recurring theme: whether the surface of people can ever harmonize with what’s inside their minds.”

During her winter break, she spent a week in Manhattan preparing for two débutante balls, at the Waldorf-Astoria and at the Plaza Hotel. She went to a bridal store and chose a floor-length strapless white gown and white satin gloves that reached above her elbows. Her sister Nina said that, at the Waldorf ball, “I remember thinking Laura was so much a part of it.”

Yet, in pictures before the second ball, Laura is slightly hunched over, as if trying to minimize the breadth of her muscular shoulders. She wears a thin pearl necklace, and her blond hair is coiled in an ornate bun. Her smile is pinched and dutiful. That night, before walking onstage, Laura did cocaine and chugged champagne. By the end of the party, she was sobbing so hard that the escort she’d invited to the ball had to put her in a cab. In the morning, she told her family that she didn’t want to be alive. She took literally the symbolism of the parties, meant to mark her entry into adulthood. “I didn’t know who I was,” she said. “I was trapped in the life of a stranger.”

Before Laura returned to Harvard, her doctor in Greenwich referred her to a psychiatrist at McLean Hospital, in Belmont, Massachusetts. One of the oldest hospitals in New England, McLean has treated a succession of celebrity patients, including Anne Sexton, Robert Lowell, James Taylor, and Sylvia Plath, who described it as “the best mental hospital in the US.” Laura’s psychiatrist had Ivy League degrees, and she felt grateful to have his attention. In his notes, he described her as an “engaging, outgoing, and intelligent young woman,” who “grew up with high expectations for social conformity.” She told him, “I lie in my bed for hours at a time staring at the wall and wishing so much that I could be ‘normal.’ ”

The psychiatrist confirmed her early diagnosis, proposing that she had bipolar II, a less severe form of the disorder. Laura was relieved to hear the doctor say that her distress stemmed from an illness. “It was like being told, It’s not your fault. You are not lazy. You are not irresponsible.” After she left the appointment, she felt joyful. “The psychiatrist told me who I was in a way that felt more concrete than I’d ever conceptualized before,” she said. “It was as though he could read my mind, as though I didn’t need to explain anything to him, because he already knew what I was going to say. I had bipolar disorder. I’d had it all along.” She called her father, crying. “I have good news,” she said. “He’s figured out the problem.”

She began taking twenty milligrams of Prozac, an antidepressant; when she still didn’t feel better, her dose was increased to forty milligrams, and then to sixty. With each raised dose, she felt thankful to have been heard. “It was a way for me to mark to the world: this is how much pain I am in,” she said. Laura wasn’t sure whether Prozac actually lifted her mood—roughly a third of patients who take antidepressants do not respond to them—but her emotions felt less urgent and distracting, and her classwork improved. “I remember her carrying around this plastic pillbox with compartments for all the days of the week,” a friend from high school said. “It was part of this mysterious world of her psychiatric state.”

At parties, she flirted intently, but by the time she and a partner were together in bed, she said, “I’d kind of get hit with this realization that I was physically disconnected. And then I’d feel taken advantage of, and I would kind of flip out and start crying, and the guy would be, like, ‘What the heck is going on?’ ” Most antidepressants dampen sexuality—up to seventy per cent of people who take the medications report this response—but Laura was ashamed to talk about the problem with her psychiatrist. “I assumed he’d see sexuality as a luxury,” she said. “He’d be, like, ‘Really? You have this serious illness, and you’re worried about that?’ ”

During her junior year, her pharmacologist raised her Prozac prescription to eighty milligrams, the maximum recommended dose. The Prozac made her drowsy, so he prescribed two hundred milligrams of Provigil, a drug for narcolepsy that is often taken by soldiers and truck drivers to stay awake during overnight shifts. The Provigil gave her so much energy that, she said, “I was just a machine.” She was on the varsity squash team and played the best squash of her life. She was so alert that she felt as if she could “figure people out,” unpacking the details of their identities: she imagined that she could peer into their childhoods and see how their parents had raised them.

The Provigil made it hard for Laura to sleep, so her pharmacologist prescribed Ambien, which she took every night. In the course of a year, her doctors had created what’s known as “a prescription cascade”: the side effects of one medication are diagnosed as symptoms of another condition, leading to a succession of new prescriptions. Her energy levels rose and fell so quickly that she was told she had a version of bipolar disorder called “rapid cycling,” a term that describes people who have four or more manic episodes in a year, but is also applied, more loosely, to people who shift dramatically between moods. Sometimes Laura thought, Women who are happy and socialize like to buy dresses. She’d go to Nordstrom and buy two or three dresses. She recognized that this behavior was “textbook”—she had bought her own copy of the Diagnostic and Statistical Manual of Mental Disorders—but the awareness didn’t prevent the purchases.

Laura felt that the pressures of her junior year were paralyzing, so she did not return for the spring semester. That summer, she kept a journal in which she outlined her personal goals: “overanalysis must go”; “stop molding myself to the ideal person for my surroundings”; “find some faith in something, in anything.” But the idea of returning to Harvard that fall made her so distressed that she thought every day about dying. She took the semester off, and, at her request, her parents drove her to a hospital in Westchester County, New York. A psychiatrist there wrote that she “presents with inability to function academically.” At the hospital, where she stayed for two weeks, she was put on a new combination of pills: Lamictal, a mood stabilizer; Lexapro, an antidepressant; and Seroquel, an antipsychotic that she was told to use as a sleep aid. Her father, Lyman, said, “I had no conviction that the drugs were helping. Or that they weren’t helping.”

Laura returned to Harvard and managed to graduate, an achievement she chalked up to muscle memory; she was the kind of student who could regurgitate information without absorbing it. Then she held a series of jobs—working as an assistant for a professor and for a state agency that issued building permits—that she didn’t believe would lead to a career. She experienced what John Teasdale, a research psychologist at the University of Oxford, named “depression about depression.” She interpreted each moment of lethargy or disappointment as the start of a black mood that would never end. Psychiatric diagnoses can ensnare people in circular explanations: they are depressed because they are depressed.

Over the next four years, her doctors tripled her antidepressant dosage. Her dosage of Lamictal quadrupled. She also began taking Klonopin, which is a benzodiazepine, a class of drugs that has sedative effects. “What I heard a lot was that I was ‘treatment-resistant,’ ” she said. “Something in me was so strong and so powerful that even these sophisticated medications couldn’t make it better.”

For a brief period, Laura saw a psychiatrist who was also a psychoanalyst, and he questioned the way that she’d framed her illness. He doubted her early bipolar diagnosis, writing that “many depressions are given a ‘medical’ name by a psychiatrist, ascribing the problem to ‘chemistry’ and neglecting the context and specificity of why someone is having those particular life problems at that particular time.” He reminded her, “You described hating becoming a woman.” Laura decided that “he wasn’t legit.” She stopped going to her appointments.

She rarely saw friends from high school or college. “At a certain point, it was just, Oh, my God, Laura Delano—she’s ill,” the friend from high school said. “She seemed really anesthetized.” Laura had gained nearly forty pounds since freshman year, which she attributes partly to the medications. When she looked in the mirror, she felt little connection to her reflection. “All I ever want to do is lie in my bed, cuddle with my dog, and read books from writers whose minds I can relate to,” she wrote to a psychiatrist. “That’s all I ever want to do.” She identified intensely with Plath, another brilliant, privileged, charismatic young woman who, in her journal, accuses herself of being just another “selfish, egocentric, jealous and unimaginative female.” Laura said that, when she read Plath’s work, she “felt known for the first time.”

Laura found a psychiatrist she admired, whom I’ll call Dr. Roth. At appointments, Laura would enter a mode in which she could recount her psychic conflicts in a cool, clinical tone, taking pride in her psychiatric literacy. She saw her drugs as precision instruments that could eliminate her suffering, as soon as she and Dr. Roth found the right combination. “I medicated myself as though I were a finely calibrated machine, the most delicate error potentially throwing me off,” she later wrote. If she had coffee with someone and became too excited and talkative, she thought, Oh, my God, I might be hypomanic right now. If she woke up with racing thoughts, she thought, My symptoms of anxiety are ramping up. I should watch out for this. If they last more than a day or two, Dr. Roth may have to increase my meds.

The day before Thanksgiving, 2008, Laura drove to the southern coast of Maine, to a house owned by her late grandparents. Her extended family was there to celebrate the holiday. She noticed relatives tensing their shoulders when they talked to her. “She seemed muted and tucked away,” her cousin Anna said. When Laura walked through the house and the old wooden floorboards creaked beneath her feet, she felt ashamed to be carrying so much weight.

On her third day there, her parents took her into the living room, closed the doors, and told her that she seemed trapped. They were both crying. Laura sat on a sofa with a view of the ocean and nodded, but she wasn’t listening. “The first thing that came into my mind was: You’ve put everyone through enough.”

She went to her bedroom and poured eighty milligrams of Klonopin, eight hundred milligrams of Lexapro, and six thousand milligrams of Lamictal into a mitten. Then she sneaked into the pantry and grabbed a bottle of Merlot and put the wine, along with her laptop, into a backpack. Her sisters and cousins were getting ready to go to a Bikram-yoga class. Her youngest sister, Chase, asked her to join them, but Laura said she was going outside to write. “She looked so dead in her eyes,” Chase said. “There was no expression. There was nothing there, really.”

There were two trails to the ocean, one leading to a sandy cove and the other to the rocky coast, where Laura and her sisters used to fish for striped bass. Laura took the path to the rocks, passing a large boulder that her sister Nina, a geology major in college, had written her thesis about. The tide was low, and it was cold and windy. Laura leaned against a rock, took out her laptop, and began typing. “I will not try to make this poetic, for it shouldn’t be,” she wrote. “It is embarrassingly cliché to assume that one should write a letter to her loved ones upon ending her life.”

She swallowed a handful of pills at a time, washing them down with red wine. She found it increasingly hard to sit upright, and her vision began to narrow. As she lost consciousness, she thought, This is the most peaceful experience I’ve ever had. She felt grateful to be ending her life in such a beautiful place. She fell over and hit her head on a rock. She heard the sound but felt no pain.

When Laura hadn’t returned by dusk, her father walked along the shoreline with a flashlight until he saw her open laptop on a rock. Laura was airlifted to Massachusetts General Hospital, but the doctors said they weren’t sure that she would ever regain consciousness. She was hypothermic, her body temperature having fallen to nearly ninety-four degrees.

After two days in a medically induced coma, she woke up in the intensive-care unit. Her sisters and parents watched as she opened her eyes. Chase said, “She looked at all of us and processed that we were all there, that she was still alive, and she started sobbing. She said, ‘Why am I still here?’ ”

After a few days, Laura was transported to McLean Hospital, where she’d been elated to arrive seven years earlier. Now she was weak, dizzy, sweating profusely, and anemic. Her body ached from a condition called rhabdomyolysis, which results from the release of skeletal-muscle fibres into the bloodstream. She had a black eye from hitting the rock. Nevertheless, within a few days she returned to the mode she adopted among doctors. “Her eye contact and social comportment were intact,” a doctor wrote. Although she was still disappointed that her suicide hadn’t worked, she felt guilty for worrying her family. She reported having a “need to follow rules,” a doctor wrote. Another doctor noted that she did not seem to meet the criteria for major depression, despite her attempted suicide. The doctor proposed that she had borderline personality disorder, a condition marked by unstable relationships and self-image and a chronic sense of emptiness. According to her medical records, Laura agreed. “Maybe I’m borderline,” she said.

She was started on a new combination of medications: lithium, to stabilize her moods, and Ativan, a benzodiazepine, in addition to the antipsychotic Seroquel, which she had already been taking. Later, a second antipsychotic, Abilify, was added—common practice, though there was limited research justifying the use of antipsychotics in combination. “It is tempting to add a second drug just for the sake of ‘doing something,’ ” a 2004 paper in Current Medicinal Chemistry warns.

Shortly before Laura was discharged, she drafted a letter to the staff on her unit. “I truly don’t know where to begin in putting in words the appreciation I feel for what you’ve all done to help me,” she wrote. “It’s been so many years since I’ve felt the positive emotions—hope, mostly—that have flooded over me.” Unpersuaded by her own sentiment, she stopped the letter mid sentence and never sent it.

aura moved back home to live with her parents in Greenwich and spent her nights drinking with old friends. She told her psychiatrist, “I don’t feel grounded. . . . I am floating.” Her father encouraged her to “try to reach for one little tiny positive thought, so you can get a little bit of relief.” When she couldn’t arrive at one, he urged her, “Just think of Bitsy,” their cairn terrier.

When it was clear that positivity was out of reach, Laura began seeing a new psychiatrist at McLean, who embraced the theory that her underlying problem was borderline personality disorder. “It is unclear whether she has bipolar (as diagnosed in the past),” he wrote.

The concept of a borderline personality emerged in medical literature in the nineteen-thirties, encompassing patients who didn’t fit into established illness categories. Describing a borderline woman, the psychoanalyst Helene Deutsch, a colleague of Freud’s, said, “It is like the performance of an actor who is technically well trained but who lacks the necessary spark to make his impersonations true to life.” In 1980, the diagnosis was added to the DSM, which noted that “the disorder is more commonly diagnosed in women.” One of its defining features is a formless, shifting sense of self. An editorial in Lancet Psychiatry this year proposed that “borderline personality disorder is not so much a diagnosis as it is a liminal state.”

In 2010, Laura moved in with her aunt Sara, who lived outside Boston, and attended a day-treatment program for borderline patients. “It was another offering of what could fix me, and I hadn’t tried it,” she said. At her intake interview, she wore stretchy black yoga pants from the Gap, one of the few garments that allowed her to feel invisible. She said that the director of the program told her, “So, you went to Harvard. I bet you didn’t think you’d end up at a place like this.” Laura immediately started crying, though she knew that her response would be interpreted as “emotional lability,” a symptom of the disorder.

Laura had been content to be bipolar. “I fit into the DSM criteria perfectly,” she said. But borderline personality disorder didn’t feel blameless to her. Almost all the patients in Laura’s group were women, and many had histories of sexual trauma or were in destructive relationships. Laura said that she interpreted the diagnosis as her doctors saying, “You are a slutty, manipulative, fucked-up person.”

Laura sometimes drank heavily, and, at the suggestion of a friend, she had begun attending Alcoholics Anonymous meetings. Laura was heartened by the stories of broken people who had somehow survived. The meetings lacked the self-absorption, the constant turning inward, that she felt at the clinic, where she attended therapy every day. When Laura’s pharmacologist prescribed her Naltrexone—a drug that is supposed to block the craving for alcohol—Laura was insulted. If she were to quit drinking, she wanted to feel that she had done it on her own. She was already taking Effexor (an antidepressant), Lamictal, Seroquel, Abilify, Ativan, lithium, and Synthroid, a medication to treat hypothyroidism, a side effect of lithium. The medications made her so sedated that she sometimes slept fourteen hours a night. When she slept through a therapy appointment, her therapist called the police to check on her at her aunt’s house. “That really jolted something in me,” Laura said.

In May, 2010, a few months after entering the borderline clinic, she wandered into a bookstore, though she rarely read anymore. On the table of new releases was “Anatomy of an Epidemic,” by Robert Whitaker, whose cover had a drawing of a person’s head labelled with the names of several medications that she’d taken. The book tries to make sense of the fact that, as psychopharmacology has become more sophisticated and accessible, the number of Americans disabled by mental illness has risen. Whitaker argues that psychiatric medications, taken in heavy doses over the course of a lifetime, may be turning some episodic disorders into chronic disabilities. (The book has been praised for presenting a hypothesis of potential importance, and criticized for overstating evidence and adopting a crusading tone.)

Laura wrote Whitaker an e-mail with the subject line “Psychopharms and Selfhood,” and listed the many drugs she had taken. “I grew up in a suburban town that emphasized the belief that happiness comes from looking perfect to others,” she wrote. Whitaker lived in Boston, and they met for coffee. Whitaker told me that Laura reminded him of many young people who had contacted him after reading the book. He said, “They’d been prescribed one drug, and then a second, and a third, and they are put on this other trajectory where their self-identity changes from being normal to abnormal—they are told that, basically, there is something wrong with their brain, and it isn’t temporary—and it changes their sense of resilience and the way they present themselves to others.”

At her appointments with her pharmacologist, Laura began to raise the idea of coming off her drugs. She had used nineteen medications in fourteen years, and she wasn’t feeling better. “I never had a baseline sense of myself, of who I am, of what my capacities are,” she said. The doctors at the borderline clinic initially resisted her requests, but they also seemed to recognize that her struggles transcended brain chemistry. A few months earlier, one doctor had written on a prescription pad, “Practice Self-Compassion,” and for the number of refills he’d written, “Infinite.”

Following her pharmacologist’s advice, Laura first stopped Ativan, the benzodiazepine. A few weeks later, she went off Abilify, the antipsychotic. She began sweating so much that she could wear only black. If she turned her head quickly, she felt woozy. Her body ached, and occasionally she was overwhelmed by waves of nausea. Cystic acne broke out on her face and her neck. Her skin pulsed with a strange kind of energy. “I never felt quiet in my body,” she said. “It felt like there was a current of some kind under my skin, and I was trapped inside this encasing that was constantly buzzing.”

A month later, she went off Effexor, the antidepressant. Her fear of people judging her circled her head in permutations that became increasingly invasive. When a cashier at the grocery store spoke to her, she was convinced that he was only pretending to be cordial—that what he really wanted to say was “You are a repulsive, disgusting, pathetic human.” She was overstimulated by the colors of the cereal boxes in the store and by the grating sounds of people talking and moving. “I felt as if I couldn’t protect myself from all this life lived around me,” she said.

She began to experience emotion that was out of context—it felt simultaneously all-consuming and artificial. “The emotions were occupying me and, on one level, I knew they were not me, but I felt possessed by them,” she said. Later, she found a community of people online who were struggling to withdraw from psychiatric medications. They’d invented a word to describe her experience: “neuro-emotion,” an exaggerated feeling not grounded in reality. The Web forum Surviving Antidepressants, which is visited by thousands of people every week, lists the many varieties of neuro-emotion: neuro-fear, neuro-anger, neuro-guilt, neuro-shame, neuro-regret. Another word that members used was “dystalgia,” a wash of despair that one’s life has been futile.

For many people on the forum, it was impossible to put the experience into words. “The effects of these drugs come so close to your basic ‘poles of being’ that it’s really hard to describe them in any kind of reliable way,” one person wrote. Another wrote, “This withdrawal process has slowly been stripping me of everything I believed about myself and life. One by one, parts of ‘me’ have been falling away, leaving me completely empty of any sense of being someone.”

It took Laura five months to withdraw from five drugs, a process that coincided with a burgeoning doubt about a diagnosis that had become a kind of career. When she’d experienced symptoms of depression or hypomania, she had known what to do with them: she’d remember the details and tell her psychiatrist. Now she didn’t have language to mark her experiences. She spent hours alone, watching “South Park” or doing jigsaw puzzles. When her aunt Sara updated the rest of the family about Laura, the news was the same: they joked that she had become part of the couch. Her family, Laura said, learned to vacuum around her. Had she come from a less well-off and generous family, she’s not sure she would have been able to go off her medications. Others in her situation might have lost their job and, without income, ended up homeless. It took six months before she felt capable of working part time.