That’s what got Rego jumping around the room, touching the light switch and spots on the carpet and sides of the door as he would ask a patient to do. On the ten-point scale, “You want to get high enough so you learn something,” he explains. “Okay, you say the seat of the chair is a four for you, so when you’re ready, put your hand on it. Keep it there. What are you feeling? What are you experiencing? Hold it there long enough so you feel the anxiety increase and decrease. If you pull it away, what led you to pull it away? What were you feeling up until the moment you did that?”
A typical course of treatment is sixteen weekly sessions of about forty-five minutes, supplemented with homework: the patient practices ERP at home, ideally daily. Preferably, she varies the kind of exposure she subjects herself to. Someone obsessed with the fear that she ran over a pedestrian will drive on side streets and highways, at night and during the day, in rain and sun, with passengers and alone—each time going over, say, a speed bump and preventing herself from doubling back to check. “That variation teaches the brain to generalize,” said Szymanski, and gradually it learns to quiet the anxiety triggered by an obsession and stifle the drive to execute a compulsive behavior.
It worked for Shala Nicely. With a therapist’s help, she trained herself to stare at the refrigerator, feeling her anxiety about Fred rise and rise, but not giving in to it by opening the door. She also practiced what you might call extreme ERP, forcing herself to grab door handles in public places even if she was not going to open the doors and ordering herself to eat off the floor several times a week to tame her contamination compulsions. “It’s worth it to get a cold or something” from assertively exposing herself to germs “to keep the OCD in check,” Nicely said. “I still have OCD. But while it used to bother me all the time, now it’s a blip on the screen.”
People with OCD consult, on average, three therapists before they find a competent one, and spend some fourteen years between when OCD first creeps into their brain and finding effective treatment. None of the OCD specialists Carli (the woman with the compulsion to count syllables, among other things) consulted seemed familiar with exposure and response prevention—and this was in New York City, hardly a psychiatric desert. One uses hypnosis, for which there is no evidence of efficacy. And when I chatted with random therapists attending the IOCDF meeting in Atlanta, easily half—including those who said they treated OCD patients or wanted to—had no clue what exposure-and-response-prevention therapy is, let alone how to do it. “There is no licensing test for treating OCD,” said psychologist Jerry Bubrick, an OCD specialist at the Child Mind Institute in New York City. “Clinicians pick up a manual for OCD and study it for a while, and then claim they know how to treat it. There is no standardization and virtually no accountability,” especially since many patients who don’t get better blame themselves and not their therapist.
Even those who find a competent therapist aren’t necessarily on the path to cure. Between one-quarter and one-half of people with OCD decline exposure and response prevention, in some cases before they start; they simply can’t stand it. Studies show that ERP responders’ symptoms decline by 60 percent to 80 percent. Note that those are percentages for responders; it excludes those who can’t stomach even one session of ERP. That raises the disquieting possibility that those helped by exposure and response prevention are the most tractable cases, people able to stomach what ERP demands of them.
And the others? Absent qualified therapists, many people with OCD wind up getting treated by primary care physicians, who rarely do more than write a prescription for Paxil, Zoloft, Prozac, and other selective serotonin reuptake inhibitors. As any patient will tell you, however, this sledgehammer approach can take a grim toll, often leaving them drowsy, nervous, nauseous, insomniac, and with their interest in sex evaporating like a puddle on a hot tin roof.
An alternative to drugs or ERP is one that many people with OCD find to be both more effective and more tolerable: mindfulness-based cognitive therapy. Originally a meditation technique, mindfulness entails mentally stepping outside yourself and observing the contents of your mind, dispassionately and without judgment or emotion. The “cognitive therapy” part refers to the essence of mindfulness, namely, evaluating your own thoughts. In a mindfulness technique pioneered for OCD by neuropsychiatrist Jeffrey Schwartz of the University of California, Los Angeles, for instance, patients learn to tell themselves that their obsession is just an errant brain signal, not a true indication of danger. “Mindfulness leverages the ego-dystonic nature of the obsession,” said Szymanski of the IOCDF: since for some 97 percent of OCD patients the “something is wrong” message they’re getting from their brain is contrary to what they know to be true, they have a head start when they monitor those thoughts, making it easier to dismiss them as aberrant neuro-noise. That makes mindfulness sound simpler, and easier to accomplish, than it is. But Schwartz and others have documented that the technique produces changes in brain function comparable to those seen when medications work: a quieting of activity in regions that are overactive in, and arguably the proximate cause of, OCD. And in head-to-head comparison of cognitive therapy and ERP for illness-anxiety compulsions like Ethan Smith’s, researchers led by psychologist Florian Weck of Germany’s University of Mainz found that cognitive therapy and ERP both produced remission rates of 55 percent after twelve months, they reported in a 2015 study in the Journal of Nervous and Mental Disease.
In our current age of cyberchondria, when Googling your symptoms can be enough to persuade you that you have a horrible, incurable illness, that comes as welcome news. Mindfulness-based cognitive therapy has proved remarkably successful at quelling the worry, rumination, and hypervigilance to body sensations so easily triggered by finding that your rash looks an awful lot like one from the Zika virus. In one case described by psychiatrists at Oxford University, a forty-something married man had experienced health anxiety since having a serious heart operation a dozen years earlier. He routinely monitored his breathing and interpreted anything out of the ordinary, even simply breathlessness, as an impending stroke or other catastrophe that only immediate medical attention could avert. But through mindfulness-based cognitive therapy, he learned to recognize that “his mind was creating catastrophic scenarios,” the researchers explained in a 2015 paper in the journal Mindfulness, but that he could train his mind to recognize them as baseless fantasies and the triggering sensations as just a little pain or discomfort. Over eight weekly two-hour sessions, he began to realize “that the thoughts that were coming into his head were ‘just thoughts’ and that he could accept them, let them come into his mind and ‘not get carried away,’ ” they reported. “He was physically present in the ‘here and now’ rather than in that scenario.” After eight weeks, many of his health anxieties had disappeared.
Which brings us back to Ethan Smith, fleeing his exposure-and-response-prevention session.
Convinced he would die without immediate medical care but frantic that McLean would kick him out if he sought it, Smith grabbed a sharp rock lying beside a sidewalk and gouged his head. In a panic, he began fabricating a story that he had fallen on the ice and badly injured himself, but as he practiced what he would tell the EMTs he realized he needed to sell it: for good measure, he plunged headfirst into a snowbank. He lay there, hypothermia creeping through his limbs, for twenty-five minutes. Finally a passerby called 911. Smith got his CT.
He did get kicked out by the OCD Institute, which saw through his ruse and decided that tough love was the only hope for helping him. His parents went along; they told him if he showed up at their Florida home they’d have him arrested for trespassing. Reeling, Smith found a dingy apartment in a crack house in South Boston and lay in bed for six days.
I don’t mean he lay in bed except for going to the bathroom, to the kitchen for a snack, or even to the front door to pay the pizza guy. No. Smith lay in bed for six days without eating or drinking; he peed into the mattress. “Death seemed like my only way out, but
I didn’t want to die,” he said. He figured the only way to not die was to get out of bed and go to the corner market. Somehow the will to live overcame the death grip that his illness had on him. Survival became more important than his compulsion. His doctors at McLean took him back, he endured ERP three days a week, and began to function again: he got a job at a guitar store, met a girl, and started living. In 2011 Smith went to Los Angeles, where he works as a writer, director, and producer. He was the 2014 keynote speaker at the International OCD Conference in Los Angeles.
He’s not cured, but he’s no longer paralyzed by the compulsion to get CT scans. Somehow what he learned at McLean, and on the streets, kicked in, and he learned to separate the being who is Smith from the pathology that was his CT compulsion, and he has held on to it for dear life.
CHAPTER FOUR
In the Shadow of OCD: Carrying Conscientiousness Too Far
AT FIRST, BIANCA HADN’T THE slightest clue about why she feels compelled to keep her sprawling three-story house in a state of organization, tidiness, and cleanliness. Certain chairs must stand in certain places and no others. Towels in the bathroom must be arranged and folded just so, light-colored ones on the outside of stacks and dark-colored ones on the inside. The dishwasher must be loaded according to a strict and undeviating system: utensils business-side up, large plates (always loaded first) toward the back, smaller plates in front, cups and glasses on the upper rack in descending order by size from back to front. In the kitchen, tall glasses must be stored on the right of an upper cabinet shelf directly over smaller ones, with medium glasses on the left; identically colored mugs hang in one place while nonmatching ones are banished to a closet. Bianca is not fanatic about keeping the house looking like a still life, however. When visiting children, stepchildren, and grandchildren leave rooms in disarray, she doesn’t feel the intolerable anxiety experienced by someone with OCD who’s faced with a dining chair that’s not at a perfect 90-degree angle to the table. “I know that I can put it back together again the way it should be, so I don’t feel too anxious,” she said. “But I definitely feel a strong need to get that done. I put everything back exactly as it’s supposed to be. I used to ask, What will the world throw at me next? What will be the next shoe to drop? These systems let me have control over things within the four walls of my home.”
The targets of Bianca’s mild compulsiveness have, over the years, extended beyond domestic affairs. During the years she worked as a piano tuner, she felt driven to re-test every note, anxiously returning again and again to notes she had already tuned, unable to leave them alone. A standard tuning takes sixty minutes, but Bianca regularly spent two and a half hours; the possibility that a note had sneakily become slightly flat or sharp irritated her brain like a cortical mosquito bite. Her morning routine is also mildly compulsive. She rises at six a.m. every day, practices yoga for forty-five minutes, then bicycles around her neighborhood for seventy-five minutes. “The routine makes sense to me,” Bianca said. “But more than that, I just like my habits. They comfort me.”
As we spoke, the emotional origins of her deep need for control came tumbling out. Growing up in Europe in the 1950s and 1960s, she had little say over her own life, even on such mundane decisions as what she would wear, how her hair would be cut, or what furniture would fill her bedroom. “Even my friends and my activities were picked for me,” she said. The feeling of her fate being in the hands of others was disquieting enough, but it was made even more stressful by never knowing “which mother I would have when I woke up each morning”: her mother’s moods swung unpredictably from white-hot anger to warm caring to cool aloofness. It all made Bianca feel at sea, lacking the emotional anchor that a predictable parent provides.
She coped as best she could, developing a strategy that crystallized during childhood idylls. Her family spent summers at an old farmstead whose house had to be aired out, dusted, de-cobwebbed and otherwise made habitable, and the lawn mowed and raked, every time they arrived. One day the mountain of tasks overwhelmed her mother. “She became so depressed about what had to be done, that I said, ‘We don’t have to do all of it right now. We’re tired after the long trip. Let’s just clean up a little bit of lawn, and put out some chairs and a table so we can have a nice haven,’ ” Bianca recalled. “That was when I realized, even if I can’t fix everything, as long as one little place is in order, as long as there’s one little island where I can think clearly, it’s okay.”
That drive to create an island of order and calm in a sea of chaos and tumult grew stronger when Bianca left Switzerland for the United States in her early twenties. A divorced, single mother struggling to make her way in a new country, she seized on any chance to grab the reins of her life. “It became important for me to have things where they belong and to do things in a certain way, even little things like arranging chairs or hanging coffee cups in the right place,” Bianca said. “It gives me a sense of peace, a feeling that there are some things I have control of. If I can’t get it all the way I want it, I can live with that, as long as there’s one little place in perfect order”—one little place like the patch of grass outside the farmhouse. “If I let things go, I feel a lot of stress and anxiety until I put them back in order,” a reminder to herself that she is no longer the little girl whose life was steered in ways large and small by the caprice of others.
Shadow Syndromes
Around the turn of the millennium, many psychiatrists began to see mental illness wherever they looked. People who are fixated on finding the perfect expression of, say, diver scallops over quinoa, or the platonic ideal of a ciabatta toscano, were not simply foodies; they were suffering from “gourmand syndrome,” one team of researchers contended. Divorced dads who forgot to send child support were not deadbeats and jerks, proposed another, but men with “environmental dependency syndrome,” unable to focus on anything not in front of their eyes. People who failed to file income tax returns on time were not just disorganized procrastinators; they suffered “from an unrecognized adult form of attention deficit disorder,” the 1997 book Shadow Syndromes argued.
The titular term was popularized by the book’s coauthor, psychiatrist John Ratey of Harvard Medical School, to mean mild forms of mental illness, based on the theory that human behaviors, thoughts, and emotions once considered quaint, eccentric, odd, or simply unusual are in fact expressions of psychiatric disorders. As the number of named afflictions exploded, it began to seem that psychiatry was trying to make us believe that we’re all a little crazy.
Not surprisingly, that spawned a backlash. Critics saw it as an effort to drum up business for therapists (“There is money in madness,” Harvard psychologist Richard McNally wrote in his 2011 book, What Is Mental Illness?). One of psychiatry’s most eminent figures, former DSM editor Dr. Allen Frances, lamented in a 2010 essay in Psychiatric Times that “what was once accepted as the aches and pains of everyday life is now frequently labeled a mental disorder and treated with a pill. Eccentrics who would have been accepted on their own terms are now labeled as sick.” Not all idiosyncrasies and quirks, even those driven by the acute anxiety that underlies compulsions, are signs of a mental disorder, he and others argued.
Critics of expanding the boundaries of mental illness pointed out that the dividing line between mental health and mental illness is prone to shifting with the cultural tides, casting doubt on the supposedly scientific underpinnings of shadow syndromes. In 1850, for instance, a Louisiana physician named Samuel Cartwright told the state medical association he had discovered a hitherto unknown disease. He proposed to call it drapetomania, from the Greek drapetes (runaway slave) and mania (craze). It meant the mental illness that causes “Negroes to run away” from their slave masters, he explained in a New Orleans medical journal, because only a crazy person would attempt to escape slavery. Flight was the primary symptom of drapetomania, but secondary symptoms included dissatisfaction with being another man’s property and a general sulkiness. And before we laugh (or cry) at
the ignorance that pervaded a nonscientific age, remember that until 1973 the American Psychiatric Association considered homosexuality a mental disorder.
Efforts to see mental illness in every eccentricity foundered once and for all on a criterion that psychiatry had long insisted on: for behaviors to qualify as symptoms of a mental illness, they had to cause distress and dysfunction. For many of us, our little compulsions do the opposite. They help us function, and they allay anxiety, the defining characteristic of a compulsive behavior. They’re soothing, not distressing; beneficial, not dysfunctional. That alone would disqualify Bianca for a diagnosis.
Although the “we’re all a little crazy” campaign largely failed, the idea that mental health is a continuum survived. In large part, that realization reflects discoveries in both neurobiology and genetics. While neuroimaging has identified patterns of brain activity and circuitry that underlie a number of mental disorders, those patterns are not clear-cut. Similarly, the genetics revolution of the last twenty years has revealed that multiple genes contribute to the risk of developing one or another mental illness; with rare exceptions, it’s not the case that the presence of a single gene causes a mental disorder while its absence prevents same. “The idea of a continuum represents a major cognitive breakthrough for genetics,” Stanford University neuroscientist Robert Sapolsky once told me. “It suggests that a middling genetic load [of genes related to behavior and emotions] gives you a personality disorder, a lighter one gives you a personality quirk, and a still lighter one gives you mainstream America.” A dozen or so genes, for instance, may contribute to the trait that psychologists call “novelty seeking,” but it’s rare for someone to have all twelve. Someone with ten, however, might be a heroin addict, while someone with one or two might grow antsy at watching the same movie twice, or might be a bit fickle, excitable, quick-tempered, and extravagant—humankind’s explorers, innovators, and iconoclasts. Similarly, a number of genes have been linked to neuroticism. Parents who nervously check their watches when their teenager is out late may well have one or two of them,I but the dysfunctional agoraphobe might have a dozen.
Can't Just Stop Page 7