Can't Just Stop

by Sharon Begley

  Scrupulosity is an equal-opportunity demon, preying on people of every religious background. That determines what form it takes. A Catholic tormented by scrupulosity may become paralyzed with anxiety that he took communion incorrectly or didn’t say the right number of Hail Marys. A Jew might become felled by the angst of fearing that she read the wrong Torah portion on Saturday morning, a Muslim by the conviction that he deviated from Mecca by an infinitesimal degree of latitude. Unlike people who engage in religious rituals out of faith (or habit), people with scrupulosity do so to avert the anxiety and distress they would otherwise feel. The person becomes narrowly focused on getting it right.

  Some of Witzig’s patients have been terrified that they are praying to Satan rather than God. Others worry that they did not repent “correctly,” are not fasting properly, or are encountering numbers like the satanic 666 much too often for it to be coincidence. Others see deceit in their most innocent actions (getting the weather forecast wrong), or feel the slightest deviation from truthfulness is a cardinal sin (some even feel compelled to read and understand every word in those interminable online agreements before clicking the “I agree” box). People Witzig has counseled told him they had committed themselves to Jesus and wanted nothing in life but to follow God’s will—only to become tied up in mental knots when they became uncertain what His will was. They need a sign, some rock-solid proof of God’s will, but OCD has a way of undermining that. No matter what they see or feel, the OCD will whisper, Wait, are you sure that lightning bolt when you picked up the phone to call your fiancé was a sign from God? Just as it whispers, Are you sure you turned off the stove?

  Just ask Jane. If you had chanced to see her walking to school in the mid-1980s, when she was seven or eight, you might well have thought she was awfully careless, always doubling back as if she had dropped something, or perhaps unusually curious, retracing her steps to check out a funny-looking bug on the ground. In fact, the little girl was besieged by “horrible, horrible” images of pentagrams and tombstones with her name incised on them and images of the fires of hell consuming her, and by profanities and blasphemies that she knew would speed her trip there.

  Jane knew precisely what to do to keep the satanic images from coming true and the blasphemies from being heard (and counted against her) by God: retrace what she was doing when she envisioned or thought them, like a burglar stomping on prints he had left to obliterate all traces of his path. Her steps were not always visible, but Jane knew where they were—she went back precisely five steps, or nine, or twelve, however many she took during the time the thought and vision unfolded in her mental theater. She felt compelled to walk over the steps, and walk over them again, as if to rewind time and resume her life from the point before the damning thoughts and images.

  After some fumbling attempts to describe to adults the vivid, terrifying pictures and thoughts that were popping into her head, Jane vowed that the safest course was to keep quiet about the visions that compelled her to perform the rituals. “I really did think I was an evil person, so that kept me from telling my story,” she told me. She resigned herself to executing the behavior that, her gut told her, was the only way she could keep the visions from coming true. “It’s just five or ten seconds of your time versus burning in hell forever,” she said. “There was a part of my brain that knew it wasn’t true, but there is a feeling in the core of your body, an anxiety that makes you do the compulsion.” And what if the thought or vision she desperately needed to erase occurred while she was sitting in a chair or lying in bed? “I had to shift to a different position,” she said. “That was the rule. That would erase it.”

  But soon Jane became caught in loops. “While I was retracing, that thought would happen again, so I had to erase those footsteps, but while doing that I had another burn-in-hell vision, so I had to erase again, and again, and pretty soon it was taking five minutes, or twenty, not five seconds,” she said. “There were times when I couldn’t make the thoughts stop.”

  As Jane got older the religiously inspired thoughts and images gave way to more worldly ones. If she thought even momentarily about failing an upcoming calculus test, she had to erase the footsteps she made during the seconds the idea took to unfold. If she had a “bad” thought during a test she felt compelled to erase what she had written until then, which was a disaster in timed tests. She was late for classes and dates and appointments; better that than failing to erase the visions. It was only as a college sophomore that Jane figured out she had OCD and began seeing a therapist; when we spoke she was on her fifth. It has helped to some degree. She knows, when the thoughts force their way in, to slow down rather than double back to erase her steps. Occasionally she is able to resist at least for a few seconds, which is sometimes long enough to fully occupy her brain with thoughts of something safe and allow her to move on. “I probably feel the urge to do a compulsion every hour of every day,” Jane said. But she nevertheless managed to graduate from college, get a master’s degree in conservation biology, and land a job at an evolutionary genetics lab at a large public university. “Something is still going on in there and it’s not me,” she said. “I’m afraid of being alone with my brain.”

  Paradoxically, perhaps, the crazier the belief that compels a behavior the more likely it is to yield to therapy. The two most successful treatments for OCD harness the power of the mind to treat, and perhaps cure, itself. When either treatment—cognitive behavior therapy and mindfulness, which I’ll discuss more fully in Chapter 3—succeeds in diminishing or eradicating the compulsions of OCD, it is because the person recognizes that the belief driving the compulsion is demonstrably, empirically false. With some part of their brain, smart, successful people like Jane know that “erasing her steps” doesn’t erase a thought, let alone change the future, just as Dave Atlas knows that turning his face to the sky is not keeping the grim reaper from knocking at his family’s door. The ego-dystonic nature of OCD can be harnessed to treat it.

  The paradox is this: the premises of much milder compulsions tend not to be demonstrably untrue. And that makes rescuing people from the resulting compulsions—to do the laundry in a certain way, to hang the tea towels or set the table or even walk through their front door just so—harder than treating people with severe compulsions. In their way, milder compulsions are even more exasperating to those who love or live with or work with the compulsive person than extremes are. The former come wrapped in a veneer of reasonableness and logic that makes pushing back against them seem churlish and futile. Indeed, my encounters with people with mild compulsions underlined even more strongly how bad psychiatrists and psychologists are at drawing hard boundaries between mental illness and eccentricity.

  * * *

  I. About 2 percent to 4 percent of people with OCD lack the insight that their thoughts are illogical or irrational. They therefore carry out compulsions in the belief that the thought that triggered them is true. In these cases, ego dystonia is absent.

  II. Psychiatrist Ian Osborn described Hughes’s compulsions in his 1998 book Tormenting Thoughts and Secret Rituals.

  III. And maybe longer, depending on whether you believe that the FBI got its man: their suspect committed suicide before his guilt could be proven.

  CHAPTER THREE

  With Treatment, from Blood in a Snowbank to Hollywood

  ETHAN SMITH’S FIRST SPOKEN WORDS were fly and bug, and not because his parents were entomologists. Instead, even as a toddler he had a palpable fear of swallowing something small and alive and six-legged which, he believed with the certainty born of a child’s understanding of physiology, would cause his head to explode. He also had forays into garden-variety obsessive-compulsive disorder, such as when he was convinced the only way to keep from vomiting while asleep was to blink in time with the flashing dots separating the hour and minute on his digital clock (dots on: eyes closed; off: eyes open). That turned out to be an excellent way to lie miserably awake for hours. But by the time Ethan was six, in the early
1980s, he had settled into his very own form of tortured compulsion: to check himself for signs of serious illness over and over and over again.

  He started off by suspecting a brain tumor in every headache and meningitis in every fever. By high school he was carrying at all times three thermometers (one might break, and so might two; hence a back-up for the back-up) and checking his temperature as frequently as his friends checked their chins for the first facial hair.

  In his twenties, Smith managed a successful acting career in South Florida, starring in national commercials and landing supporting roles in television and film. But by his early thirties, his OCD completely overtook him. “My compulsion became CT scans,” he told me. He kept having throat-clutching thoughts that he “might” have hit his head on something and have a cranial bleed. He was 99 percent sure he had, and the 1 percent of doubt from the rational bits of his brain didn’t stand a chance. The risk seemed so real, he started going to emergency rooms and claiming he had in fact hit his head, just to get a CT. At one point it got so bad that when the scan was finished he’d sit up and think he might, just might—who could be sure?—have bumped his head against the machine itself, which triggered such a panic that he screamed at the doctors, “I need another one right now!”

  Researchers aren’t sure what to make of the compulsion to seek medical treatment absent signs of illness. Some symptoms, such as the dizzying anxiety triggered by the belief that one is seriously ill, overlap with panic disorder. Others, such as the obsession with checking for symptoms and the compulsion to get treated, overlap with OCD. In the last few years, however, research has been converging on the idea that a compulsion to seek medical tests and treatment is actually its own disorder. The American Psychiatric Association calls it “illness anxiety disorder,” defined as an occupation with serious illness despite not having symptoms of such. At any given time at least 1.3 percent of U.S. adults, the association estimates, have it, but the prevalence seems to be rising: anxiety about health affects most of us at some point, and a 2015 study in the journal Mindfulness estimated that it becomes clinically significant for up to 5 percent of the general population at any one time.

  Studies have found that just a small percentage—perhaps 8 percent—of patients with illness anxiety disorder (formerly called hypochondriasis) also have OCD. That’s a higher prevalence of OCD than in the general population, but nevertheless shows that illness anxiety is a distinct compulsion rather than a manifestation of OCD. Instead, people with illness anxiety disorder are more likely to have generalized anxiety disorder (73 percent, found a 2000 paper in the journal Psychiatric Clinics of North America), major depression (47 percent, twice the rate in the general population), or phobias (38 percent versus 23 percent of everyone else). The key reason why a compulsion to seek medical care is not a form of OCD is how each disorder feels. While patients with OCD generally view their anxieties as unrealistic (the ego-dystonic nature of the obsessions) and try to resist them, people with a compulsion to seek medical care are usually convinced they have a severe disease. Ethan certainly was, and the feeling that drove his behavior places it squarely in the realm of compulsions: a desperate anxiety compelled him to undergo screenings and diagnostic tests such as CT scans, and it was only by doing so that he was able to reduce that anxiety—albeit, as with all compulsions, only temporarily.

  When I asked Smith whether his compulsion to seek medical care came from a traumatic childhood illness or accident, he suppressed a laugh. No, the only thing he could remember was the terror of swallowing a bug and having his head explode. That jibes with new research on this kind of compulsive behavior. For decades psychiatrists had assumed that its roots lay in previous experiences with illness, if not one’s own then that of a loved one, seen up close and terrifyingly. But as a team of German psychologists wrote diplomatically in a 2014 paper, “empirical research [on that belief] is insufficient.” In fact, when they studied 240 volunteers (roughly one-third were healthy, one-third had illness anxiety, one-third had a different anxiety disorder), they found that more patients with illness anxiety recalled having been seriously ill during childhood, and of experiencing other trauma during childhood, than the healthy controls. But there was no difference between patients with illness anxiety and those with other anxiety disorders. In other words, childhood illness and trauma were risk factors for later anxiety, but not specifically for anxiety about illness.

  Smith didn’t care about the roots of his compulsive behavior. After doctors told his parents that he should be admitted to a psychiatric ward, probably for the rest of his life, he eventually washed up at the OCD Institute of McLean Hospital outside Boston. He was confined for two months. During one therapy session in January 2011, Dr. Jason Elias asked Smith to smack his own head as hard as he could: this was a form of exposure-and-response prevention, or ERP. A standard OCD therapy, it involves exposing patients to what triggers their compulsion (if it’s germs, they might touch a doorknob in a public building), with the trigger becoming more and more intense (after mastering doorknobs the patient might try to touch toilets in a public bathroom), but preventing the patient from executing the compulsion (washing his hands). Since Smith’s compulsion was to seek medical treatment, his therapy was to experience a minuscule, meaningless smack upside the head . . . and then try, just try, not to run to the ER and demand a CT scan.

  “I refused to hit myself, and they said if you don’t we’re going to call security,” Smith recalled. Desperate, he finally smacked his head, delighting his therapists with his “progress.” Smith, however, was filled with a sense of misery as profound as any he had experienced, and staggered out of the therapy session onto the frozen streets of Boston.

  Uncompelled

  Simon Rego is bent over double, whacking his hand on the carpet where his office door swings open. “How about here? Could you touch here, where no one ever walks?” He springs up and touches a light switch on the wall. “How about this?” he asks. “Or the back of this seat? Or the seat itself, where people put their behinds!” “How about the inside of the door; I’m the only person who touches it? Or the outside of the door—does that seem more contaminated, since it faces the waiting room?”

  Rego, a clinical psychologist, is darting around his office at Montefiore Medical Center in the Bronx on the first day of summer, having said goodbye to his three p.m. patient and settled in to persuade me that exposure-and-response-prevention therapy is not the horror it seemed to Ethan. ERP dates to the 1960s, when British psychologist Victor Meyer applied to humans what worked with frightened animals: if rats were exposed to what scared them for a prolonged time and prevented from leaving the situation, they became less scared. Meyer, who had served as a fighter pilot for Great Britain in World War II and been a German prisoner of war after being shot down over France, first tried ERP in 1966 with a patient at Middlesex Hospital in London whose severe contamination fear caused her to spend most of the day cleaning. After shock treatment, drugs, and psychotherapy failed to help, Meyer and his nurse exposed her to objects that triggered her anxiety—and, crucially, prevented her from washing or cleaning. They actually turned off the water in her room. After four weeks of this, her anxiety began to ebb. After eight, her cleaning was still compulsive but less all-consuming, though she was by no means cured. ERP is still the predominant form of therapy for OCD today.

  The psychological basis for ERP is that obsessions convince people with OCD that catastrophe is imminent and can be averted only through a specific action (checking that the door is locked, tapping a subway pole, washing a city’s worth of germs off your hands . . . ). Since executing the compulsion drains away the anxiety, the brain learns that compulsions are singularly effective at alleviating intolerable anxiety and becomes trained to execute the compulsive behavior as quickly as the rest of us would act if we saw a toddler teetering on the edge of a fire escape.

  ERP forces you to watch the toddler, do nothing, and hold out long enough to see that the little tyke
crawled back to safety. See? You did not follow your compulsion, yet everything turned out fine. Therapists don’t actually put toddlers at risk, of course, but in patients’ eyes they come close. ERP gradually exposes a patient to the situations or objects that trigger anxiety. But the patient is supposed to resist carrying out the related compulsion—and, in theory, wait for the anxiety to dissipate on its own. That teaches him that it can and will. With exposure and response prevention, when anxiety levels rise but nothing disastrous happens, the brain notices. “You confront the danger your brain tells you is imminent and life-threatening, but you don’t do anything to protect yourself,” said Jeff Szymanski of the International OCD Foundation. “By having the strength to find out what happens or doesn’t happen—you don’t get sick from not washing your hands after touching a doorknob—you train your brain to realize that the probability of this terrible thing occurring is low.”

  Therapists using ERP construct a scale of horrors. If someone is obsessed with the ubiquity of germs, the therapist picks something well short of having the patient wipe her hands inside the bowl of a public toilet. The patient describes how anxious she feels touching, say, a doorknob in the therapist’s office: 10 (I am going to die), 9 (I could die), 8 (maybe I won’t die just this one time), 7 (this feels horrible), 6 (this feels bad), 5 (I don’t like how this feels), and so on down to 1 (I’m not feeling any distress) and 0 (peace and serenity). The therapist refrains from giving reassurance; no “it’s okay, you know there aren’t lethal germs there.” The patient is supposed to experience throat-clutching anxiety, because that is the only way to become desensitized and habituated to it—much like (to pick an example from my own household) keeping the thermostat at 50 degrees inures you to cold.