Obsessive-compulsive disorder (OCD) is, in the truest sense, a family affair.
Typically, people with untreated OCD find themselves increasingly isolated from others, preoccupied with their terrible thoughts and urges, and choosing out of fear or shame, or both, to share their awful secret with no one.
Within families, this can be devastating. Again and again, our patients at UCLA tell us, “I’m driving my wife crazy, pushing my friends away from me. My family can’t stand it anymore. I have to stop doing this.”
JUST SAY NO
Commonly, people with OCD fall into a pattern of using OCD as a “weapon” in interpersonal conflicts. In one frequently observed personality disturbance, dependent personality disorder, the person with OCD becomes dependent to a pathological degree on the people he or she lives with to get things done. Family members become part of the OCD—enablers—actually doing the compulsive behaviors for the person to keep peace in the household. The person will demand, “Check that lock for me” or “Scrub the walls for me.” By giving in, of course, the family only ensures that the person will continue to get worse; nevertheless, out of sheer desperation, they usually give in.
Spouses have told us that if they refuse to be drawn into the bizarre behaviors, they are met with tantrums and tears. Eventually, all their energy may be poured into trying to cope with the person’s illness. They may cajole or plead with the person to stop—or they may lie and say that they did such-and-such a thing or avoided doing so-and-so. Lying, of course, is not helpful to the person with OCD in the long term. The wife of one man with severe OCD acknowledged that she does not tell her husband the truth about where she has been if the truth will cause him to react violently because of his OCD fears. Once, she went someplace that was “off-limits” and thought for a moment that she had seen him. “I actually began having palpitations. You’d have thought that I’d robbed a bank and the police were right behind me.” If he asks her outright if she went where she wasn’t supposed to go, she will tell little white lies. She reasons, “If I say no, this man gets to have a nice dinner and a lovely evening and so do I, instead of an episode of swearing and slamming doors.” Lying makes her life bearable. She knows she shouldn’t be buying into his illness, but after years of coping with OCD, she’s weary. “So I’m an enabler. One little word and my evening’s nice.” Doubtless, there are thousands of women who can relate to her predicament. What she does is perfectly understandable, perfectly human. But, in truth, she is sabotaging his progress. When she learns the Four Steps herself and works to help him apply them, they’ll both be much better off. She’ll stop being an enabler of his OCD and start being a behavior therapist. The one-line message for family members is: “Don’t enable the OCD—enable the behavior therapy.”
A child with OCD can totally disrupt a family, waking them many times during the night with demands and dictating their lives down to where they must sit in a given room and at precisely what time they must do X, Y, and Z. Too often, parents allow themselves to be sucked into this behavior because they have heaped guilt on themselves, convinced that they are responsible for the child having this awful illness. As you shall see, both environment and genetics play a role in most cases, but the biological factors are the primary reason the person has OCD. However, emotional and environmental factors are often the critical ones in determining whether the person does behavior therapy and gets better.
OCD AS A WEAPON
Although the family cannot force the person with OCD to get well, they can take charge of their own lives, refusing to participate in enabling symptoms, to be prisoners in their own homes, or to be what in popular psychiatric jargon is called codependent. The confrontation may not always be pleasant, but the end result is that the person is apt to improve. The bottom line is always this: Is the family member helping or hindering the person’s efforts to do the Four Steps?
Consider the case of a family in which one member has a contamination obsession. Parts of the house may become off-limits to the entire family. The person keeps everyone out because of an overwhelming fear that they will make the area dirty and he or she will then have to start on an out-of-control cleaning binge. (Ironically, when cleaning compulsions get really bad, whole rooms may become profoundly filthy because the person with OCD is afraid to start cleaning, and no one else can enter the room.) In some cases—and they aren’t that rare—people have actually ended up living in tents in their backyards. Even when the obsession doesn’t get to that stage, the usable inside space tends to keep shrinking and shrinking. In addition, objects become off-bounds; perhaps none of the dishes or eating utensils can be used, or certain items of clothing cannot be worn.
The partner or spouse must take a stand. After the 1994 earthquake in Los Angeles, Olivia began obsessing that water from the toilet was somehow flowing into her washing machine. She would check and check and then ask her husband to stick his hand inside, just to make sure. When I talked to them together, I advised him to start telling her that he would look, but he wouldn’t put his hand inside. He would also remind her to Relabel and Reattribute. He was to reassure her, “There’s no water. It’s just an obsessive thought, a false message from your brain. We’ll check it quickly to get the compulsion out of the way and just move on.” After a few days, he was to go one step further and ask, “Are you sure you really want me to do this? Let’s Refocus on another behavior.” The strategy paid off. In time, her urge to check decreased markedly.
When those with OCD ask others to help them do their dreadful tasks, they may simply be so overwhelmed by intrusive thoughts and urges that they feel they need more hands to help them perform their bizarre rituals. On the other hand, they may well have a hidden agenda that they may not be aware of themselves: people with OCD frequently use it as a weapon in interpersonal conflicts. For example, if they want to annoy another person or get even for some real or imagined hurt, or if they perceive that they are powerless in the relationship and that their OCD can give them power, they will be less motivated to fight off their urges and the uncomfortable feelings the urges cause. Moreover, when they feel that their suffering is being demeaned or underestimated by other family members, they may be especially apt to try to get even by making other people’s lives miserable, either quite willfully or only half-consciously. A psychological tug-of-war ensues.
In behavior therapy, we draw a line in the sand right off, explaining very clearly to both the person and his or her family that this is not acceptable behavior. Involving family members in treatment is essential, both for support and to educate them about OCD.
WHO IS THIS STRANGER?
In time, through faithful practice of self-directed behavior therapy, people can and do change their brain and conquer their OCD symptoms. But as the person with OCD gets well, family dynamics are apt to change, often with devastating psychological consequences. Roles become reversed, and the once-powerless partner may make a power play. Others in the family may resent that the person has improved because now the family has to start facing its own realities and shortcomings, which may not be related to the OCD. The person is no longer an excuse for the family’s failings or a doormat. He or she is someone with newfound self-esteem, demanding to be dealt with as a fully functioning member of the family. Suddenly, there is a stranger in their midst.
Thus, when the person starts to improve, the family may unconsciously begin to undermine the treatment. For example, for years one woman with OCD had made her husband jump into the shower as soon as he came home from work because she thought he was contaminated. When she began to get better in therapy, he preferred to keep doing so than to have a well wife who might start asserting herself in more worrisome ways.
Dr. Iver Hand, the distinguished University of Hamburg psychiatrist who has been studying OCD for 20 years, believes that intimacy issues are a primary fueling factor in maintaining the disease, that people get a “secondary gain” from the OCD—that is, they use it to keep others at an emotional distance. At UCLA we have demonstrated that people can be taught to let go of their OCD without addressing intimacy issues, but these secondary gains are the primary reason why some people do not respond to treatment. In other words, if a person with OCD has a well-entrenched pattern of fending off people, he or she will also find reasons to fend off doing the hard work of behavioral therapy. Although I am convinced that OCD is more a biological than an emotional disorder, there is almost certainly an interface between the two. In therapy, the person must be honest about these underlying issues if he or she is to get the maximum beneficial effects.
EMOTIONAL BURNOUT
At UCLA, our patients have taught us a great deal about the nonbiological manifestations of OCD—how it affects personal relationships, professional goals, and life paths.
Christopher, who had terrible blasphemous thoughts, is young and single and would like to have a girlfriend but is unsure of whether a “normal” woman could be attracted to him. And, he says, “I have this rule that I really can’t have a relationship with girls who themselves have OCD or some other kind of mental disorder. I can’t have that because I don’t really want OCD or, more generally, mental disorders to have any more of a part of my life than they already have had.”
Michael, who has the obsession about his pants being too tight, until recently felt extremely uncomfortable in most social situations, unable to “fit in”—and relationships with women were no exception. He believes that his OCD, which he has had since childhood, is at the root of these feelings of social inadequacy. In grade school, he tended to be distracted by OCD compulsions, such as repetitive counting, and although he knew there was something strange going on, he never felt able to talk to his parents about it. As a consequence, they put his poor performance down to his being “lazy and kind of disturbed,” a bad person. (Kyle, who had violent OCD thoughts about himself and others, had an even worse childhood experience: His parents heaped guilt on him, telling him that his odd behaviors were just the “Satan in him.”)
In retrospect, Michael wishes he had felt free to tell his parents about his crazy thoughts. “But,” he says, “I’m sure my parents would have sent me to an institution, where it wouldn’t have been understood what was going on…. To this day, my father doesn’t really understand. I don’t think mental illness is included in his vocabulary.” (Michael is probably right; little was known about OCD thirty-five years ago, and many people still don’t understand it.)
Michael yearned to communicate to his parents what he was experiencing, yet he never could. “All my life,” he says, “I was just wanting someone to say, ‘I’m sorry. I wish things were better. I realize you try.’” But because he never heard these words, he never felt fully loved or fully accepted—and he learned to bottle up his own feelings. As he has grown older, that trait has worsened. “One thing I see in common with people with OCD is that their feelings get numb. When I get into a relationship, I immediately close down my feelings and really sabotage myself. And that’s when the OCD will be the strongest. At the moment you want to really feel something, all you feel is the OCD.”
OCD-fueled fears can be much stronger than any other emotions, including love and grief. For instance, an elderly woman in the UCLA OCD therapy group has a death-related obsession that is so strong that she cannot with comfort go anyplace where people have died, even centuries before. A family vacation to Tombstone, Arizona was traumatic for her. Everything she had worn there or taken with her became contaminated. She has alienated herself from dear friends because they can’t understand her silence when they lose loved ones. But she cannot bear to pay condolence calls or even to pick up the telephone and say how sorry she is. She rationalized that by this avoidance she was keeping her anxiety level low, even at the risk of losing friends. That’s not very clear thinking, though it’s understandable that someone would be willing to make that tradeoff. In reality, it’s not a true tradeoff. By not making condolence calls, she is just setting herself up for her intense obsessional fear to worsen and worsen. If her fear is to go away, she must confront it. Another woman was unable to say good-bye to her father as he lay dying because compulsions prevented her from leaving her house to get to the hospital on time.
Recently, things have turned around for Michael, who has faithfully practiced the Four Steps, reinforced by regular attendance at the OCD therapy group at UCLA. For years, he had used medication to bolster therapy, but he came to believe that “medication was really leveling out my personality. I was just very numb. My feelings were very much kept in check. In order to fight their OCD, people have to really let their feelings go.”
Although his OCD was largely under control, Michael felt that he had reached a plateau, and he wanted to do better. Therefore, he decided to go off the medication and felt better almost as soon as he did. Although he has experienced some escalation of his OCD thoughts and urges since then, he uses the Four Steps to effectively control them. “I’m going downhill now, rather than fighting my way uphill, caught on the treadmill of OCD.” And, for the first time in years, he is experiencing deep emotions. He remembers, “When my mother died a few years ago, I didn’t cry at all.” Again, that numbness. “But when my favorite baseball player, Mickey Mantle, died”—this was after Michael went off the medication—“I was hurt very badly and I cried and was able to let out my feelings.” When he is able to do so, he finds that his OCD level is very low, whereas when he suppresses his feelings his OCD is at its worst.
The isolation felt by people with OCD is largely the result of their decision to keep their terrible secret from others as long as they can. Michael, on the other hand, likes to tell people that he has OCD—“It’s a very liberating feeling, a real catharsis. You know, ‘Hey! I’m crazy. How are you?’” But he has also learned that most people either don’t care to know about his problem or react by bombarding him with a list of physical or mental, symptoms of their own.
TO TELL OR NOT TO TELL
Barbara, who obsessed about whether she had unplugged Mr. Coffee, told everyone when she was first diagnosed, figuring that “if people knew the very worst about me and still thought I was okay, then I was okay.” But she quickly learned to keep quiet about her OCD. At work, people would respond either by making jokes at her expense or looking perplexed and responding, “Why don’t you just stop it?” Barbara realized that being forthright about OCD was a bad career move. Unfortunately, that is all too frequently the case.
Benjamin, who once had to live in a totally organized environment, says, “I don’t see anything productive about telling people I don’t have to tell because of people’s general lack of understanding about mental disorders.” He doesn’t tell work associates or new friends, for example. But he has been open with his girlfriend and with his family, and both have responded positively. The decision to be honest with his family was a tough one: “Because I come from a highly successful family, high-powered people who were successful socially and professionally, I had sort of built this brick wall around myself” in an effort to hide this defect from them. Telling them about his OCD was “a great relief. After I opened up, they opened up much more. It had a positive snowballing effect. Their response was much more empathic and understanding than I had anticipated. I no longer have to carry around this big defense. I’m a much more open person, more able to admit other weaknesses and to laugh at myself.”
He learned that “people respect other people for accepting themselves for what and who they are. And people do have a high level of tolerance for a physical disorder—if they see that the person is trying to function and interact as well as he can.”
Benjamin has observed that others can sense in people with OCD a preoccupation and lack of spontaneity that inhibits intimacy. As he gets his OCD more under control and is less preoccupied with himself, he hopes to expand his social contacts. “I know I’ve got to step around the OCD. I’ve got to function like other people do. I have a responsibility toward other people. I am constantly evaluating myself: Is it my OCD that’s keeping me from being a loving person, a person who can have an impact on other people’s lives? A person who can be helpful, caring, more empathic?”
Not everyone, of course, has had as positive an experience. Christopher found that his parents never really understood his OCD and just counseled him to try to “think good thoughts all the time.” This lack of understanding led to tense encounters with his father whenever the subject came up. “I was actually forced at one point to quit seeing a doctor because I supposedly didn’t really have a problem and the ‘psychiatric stuff’ had gone on long enough.” Several months later, Christopher persuaded his parents to allow him to go into the OCD program at UCLA, where I introduced him to our Four-Step program. He continues to make progress and is a regular in our OCD therapy group.
OCD patients frequently talk about having OCD personalities, of being extremely introverted, afraid of aggression, and unable to deal with aggressive people. Jack, the compulsive hand washer, has bounced from job to job and has learned, “I really don’t like dealing with people that much. Those seem to be the jobs I do the absolute worst in. I had a summer job as a bank teller, and it was terrible. Customers demanded speed and friendliness, while I was just concentrating on what I was supposed to do. I was definitely not the friendly bank teller.” He also taught school for a while. “Can you imagine? At the high school level, it’s all assertiveness and discipline.” Not Jack’s strong suits.
USING COMPULSIONS TO CONTROL
In an interview for this book, Dr. Iver Hand confirmed that those with clinical cases of OCD may tend to settle into menial, undemanding jobs. “People with OCD can be pretty successful” at the right job, he said, “like being a mechanic or a computer programmer. Their OCD can actually help them do a good job. But if they get a promotion, they have no skills to lead. They don’t know how to handle competition problems. Within a very few months, people who, from their point of view, were pretty happy with their professional lives completely overcompensate and develop compulsions that make them absolutely unable to go to work.”
Undoubtedly, environmental and genetic factors both play some role in the development of OCD. Several people with OCD have told me that they grew up in households headed by either a very rigid father or a dominating mother (which, of course, could be the result of the parent having undiagnosed OCD) and that they believe this background contributed to their having very low self-esteem. To compensate, Dr. Hand found, these people may develop controlling compulsions. “They have to be perfect” as a way of controlling their social environment. Still, he said, “Nobody knows why some people who have grown up under these conditions later develop OCD and others don’t, or develop other disorders.” Nevertheless, the scientific evidence for a biological pattern of genetic inheritance has grown quite strong.
Low self-esteem can set people up for failure. A man with OCD, for example, who tells himself, “I’ll never get married because no one will deal with this stuff,” creates a self-fulfilling prophecy, cuts himself off from social outlets, and ends up alone.
It is clear that many people with low self-esteem grow up to have latent aggressive personalities. They are insecure, even if they manage to function passably well both socially and professionally, but they lack real social skills and distrust those around them. In a marriage, if they have the biological predisposition, they may develop obsessive-compulsive behaviors to control their spouses. Or in self-defense, a child who grows up in an emotionally tumultuous environment may develop OCD as a counter-weapon. “They build up their own safe little world,” Hand noted.
Sometimes, but not always, Hand said, children will respond with hatred. They may seek affection elsewhere, perhaps from their peers. In interviews with OCD families, he sees a lot of anger and aggression among the members. “It’s horrible, frightening—the whole family, one after another, will say they had thoughts of killing the other one.” The OCD plays a role, certainly, but it may not be the major one, and the real, underlying problems come out during treatment.
LOOKING FOR LOVE
When a parent has OCD, a child may grow up harboring fierce anger and resentment for having been denied a “normal” life, having had to participate in the parent’s bizarre and time-consuming rituals. Dottie, who washed excessively to try to rid herself of the fear that something would happen to her son’s eyes, explained to him when he was old enough that she had an illness called OCD and that she did crazy things because she could not help herself. But when he went off to college, he upset her greatly by saying, “I’ve had enough of you, Mom.” A single parent, she had done everything she could for him to try to make up for the turmoil she created. “I thought I was a good mother, but a couple of years ago he told me, ‘I thought you were the most terrible mother there was.’ If someone had taken a knife and stabbed me…I mean, that was the worst thing anyone’s ever said to me, ever. Whether he really understands or not, of course, it doesn’t matter now. I did the best I could.”
The story of Karen, the compulsive hoarder in our UCLA group, is a strong argument for the role of both environment and genetics in the development of OCD. Karen’s father demanded perfection of everyone else in the household, though he was far from perfect himself. Without doubt, he had classic OCD—checking and contamination obsessions and an over-the-edge compulsiveness about not wasting anything. Karen actually “learned” OCD at his knee. He showed her how to check the knobs on the stove just so and lectured her about the dangers of bacteria and viruses. She recalls, “Taking care of a splinter was practically like performing surgery. There was this whole routine to make sure no infection developed.” If Karen failed to carry out one of his orders, his face would contort with rage, and she knew a beating was coming. Desperately seeking his love and approval, she found ways to get them. He insisted that the family buy everything secondhand, usually at church rummage sales, and he would take Karen to the city dump to pick up junk that he would fix up or make something out of. Karen took to salvaging items from trash cans in alleys and bringing them home. Her finds always resulted in a pat on the head. Karen says, “In my middle age, these ideas and values of my early years came back to haunt me—and very nearly ruined my life.”
Most of the time, Karen compensated for the lack of affection at home by being a “good girl,” getting all A’s at school and obeying her father’s ridiculous demands. Still, he never let up on her. One day she exploded to her mother, “I hate his guts!” Certain that he had heard her, she dreaded coming home from school that day to face the consequences. When she walked in, she found him lying dead on the kitchen floor. He had had a heart attack. Karen says, “I was 15 years old. I felt I had killed my father as surely as if I had held a gun to his chest and pulled the trigger.” From then on, she strove even harder to be perfect, reasoning that somehow her father would know and that would make things right between them. Her quest for perfection proved costly. She developed anorexia nervosa and a binge-and-starve eating compulsion and wound up in a psychiatric hospital the day of her high school graduation, where she was to have been honored as the girl with the highest grade-point average.
Children often respond quickly to therapy. An 11-year-old girl with no history of psychiatric illness developed obsessions and compulsions after experiencing her first earthquake soon after the family moved to southern California. She obsessed that her parents would be injured or that she would be separated from them. (There was some logical basis for her fears because the family’s home was near the epicenter and sustained some damage.) The child developed sleep disorders and compulsive behaviors. Whereas she had once been a typically messy 11-year-old, she began arranging her desk and belongings just so. She devised a ritual whereby for thirty minutes at bedtime she would have to write on an inkboard, “Nothing is going to happen to Mommy and Daddy.” She also brought a glass of water to her bedside each night, convinced that it would keep her mother, her father, and her rabbit safe. Since the child’s father is a psychiatrist, he immediately recognized that she had a problem, and the family sought professional help five weeks after the behaviors began. In therapy, the therapist told the girl that she was developing a disorder called OCD and explained what it is and what it does. The girl was also told that she must resist her compulsions or they would only get worse. After three months of treatment, her symptoms had virtually disappeared. Less aware parents might have continued to cater to the child’s OCD, thinking it was a passing phase, and OCD could have dug in and eventually thrown the family into emotional chaos.
A SHARED SICKNESS
Frequently, family members will accommodate the person with OCD to an absurd degree—Karen’s husband, for example, allowed the junk to pile up in their house until they had only a narrow path that was navigable. It had been years since they had allowed people in. Still, he tolerated her bizarre behavior. Was he himself sick? Dr. Hand thinks so. “Only people with their own severe psychological problems,” he believes, would let such a situation get absurdly out of hand. He mentioned a case of a couple who moved six or seven times, thinking that things would be different in a new home, but it never took long for the new place to become filled with junk.
Hand insists that the family be involved in the diagnosis but allows them to decide on the degree of their involvement in therapy. The person with OCD may be very artful in covering up whatever other problems he or she has—such as difficulty in one-on-one relationships—and may resist too much delving by the therapist. “They are afraid,” Hand stated. “They develop an attitude of learned helplessness. They have their problems, but those problems cannot be solved. If they’re in a stable relationship, the relationship is usually sick as long as they have their OCD. Both sides have no hope that any real improvement is possible but, at the same time, they are very, very scared to disrupt everything. So they prefer to live in bad relationships.”
What Hand calls “interactional dynamite” often develops in families. This term means that the person with OCD harbors long-term aggressions and at crucial, and inappropriate, times uses the OCD to attack his or her spouse for some real or perceived violation of their relationship. Thus, a “sudden outburst” of very intense compulsive behaviors can occur, causing chaos that disrupts the lives of other family members, with the resulting distress and aggravation.
Hand related some case histories from his practice in Hamburg, Germany: One woman who lives with her daughter and son-in-law constantly nagged her daughter about her house not being clean enough. Ultimately, the daughter developed a defensive compulsion. When making the beds, she spent hours and hours smoothing the sheets just so and increasingly neglected the rest of the house. When the mother tried to break her daughter of this habit, the two fought and the mother threatened to have a heart attack. In reality, Hand found, this was just the culminating battle in a long-standing war for dominance. The power struggle, in which the mother insisted that the daughter be a better housewife, developed into a paradox in which the daughter used her compulsions to get the upper hand.
Another woman became obsessed with her belief that twenty years earlier, her husband had an affair. When she confronted him, calling him a “dirty pig,” he denied it. Ultimately, she was hospitalized with pathological symptoms of jealousy. When she returned home, she developed a massive cleaning compulsion that resulted in 80 percent of the house becoming virtually uninhabitable because in sixteen hours a day of furious cleaning, she could get only 20 percent of the house “clean enough.” When her husband came home from work, she demanded that he undress, and she would bathe and disinfect him from head to toe. Her rationale was that the long-ago affair had made him dirty, and though she could not rid him of that inner dirt, she could rid him of his outer dirt. This gave her a feeling of control. In therapy, it came out that what consumed her even more than the suspected affair was the fact that her 6-year-old daughter, her favorite child, had continued to show open affection toward her “errant” father. The woman improved and stopped her cleaning rituals, but she said that she was forced to stop only because she had developed arthritis in her knees, a diagnosis that was never confirmed. She even persuaded her husband to join a dance group with her: The exercise, she explained, would be good for her arthritis.
Still another case was a husband who had a compelling need to repeat simple sentences over and over for hours at a time. He had to do so in front of his wife, so she could assure him that he had correctly pronounced all the words in each sentence and that his voice had the proper intonation. When his wife tried to wiggle out of this chore, he would lock the doors. Finally, he took to locking her inside the bathroom while he stood outside the door, repeating his sentences. Hoping for release, she would occasionally shout through the door, “Good!” or “Correct!” This only aggravated him further because he figured she was not being honest with him. One day, the wife managed to escape from the house, get into her car, and pull out of the driveway. Just then, her husband rushed into the street, flung himself in front of the car, and forced her to stop. He won.
In treatment, Hand tells patients that they must work out the advantages and disadvantages of clinging to their OCD. If they are in therapy not because they want to be—but because someone forced them into it—he believes treatment is futile. And, he added, the therapist and person should work together to develop behavior therapy strategies. For example, the housewife who gets even with her husband by developing cleaning compulsions might be told how their relationship could be reorganized so she could get the same power benefits without the OCD behavior. This technique can be thought of as a broadening of the application of the Reattribute step—it is not only the brain that is causing a person to be plagued by OCD symptoms, but the fact that OCD is being used as a mechanism to manipulate others in his or her interpersonal life. This is the “secondary gain” element of OCD symptoms, and the Reattribute step can be used to actively address it and begin to deal with it. By recognizing the role OCD can play in your emotional life, you can make the healthy changes that decrease your tendency to use OCD symptoms in this ultimately self-defeating way. This is another example of how the Four Steps can be used to help enhance the process of better managing the OCD.
UNDERSTANDING, NOT PAMPERING
Let me assure you that it is not true that OCD and healthy marriages and relationships always go together like oil and water. There are cases of couples working together using the Four-Step program to build stable, loving, and supportive relationships.
But the obstacles that OCD can throw in their path should not be negated. People with the disorder may develop sexual anxieties linked to the fear of losing control. One person may have violent thoughts that he or she will never act out, while another may obsess that some wild and uncontrollable sexuality will be unleashed. The person with OCD may take out latent aggressions by initiating conflicts, often involving OCD symptoms, that result in the avoidance of intimacy. Deep down, the motivation may be to avoid the risk of being hurt by opening up emotionally—the old self-esteem issue.
Another case related by Dr. Hand was a teenage boy who developed bizarre food behaviors. He could eat only one thing—a rare and costly fish—and had to be fed by his mother in a ritualistic fashion. His parents were allowed to talk to one another only in his presence and only on topics he chose. He regressed in some areas to age 2 and began dirtying his bed at night. Significantly, all these symptoms came on after the father threatened to have an affair and break up the marriage. The boy achieved what he wanted: When he got sick, his father broke off the affair. The boy, however, became sicker and sicker, withdrawing from his teenage friends and from the outside world. A vicious circle developed: The father came back home, but the marriage was a marriage in name only, with no mutual affection. The mother now took care of her emotional needs by devoting herself to her son, enabling his OCD to escalate. The boy used his illness to dominate his parents. He kept the family together, but at his own expense. They were all together—and all sick. This story did not having a happy ending. The boy improved greatly in family treatment but later relapsed. The social deficits he had developed proved to be disastrous when he tried to reconnect with his peers. His mother lapsed back into her old enabler role. It was family business as usual.
Finally, a woman came to Dr. Hand seeking help after her neighbors complained that she made too much noise when she unlocked the door to her apartment; she explained that she just wanted to know how to calm the neighbors. In therapy, she began to talk about her compulsive Bible translating. As a young woman, she had joined a monastery, eager to withdraw from normal social contacts. She gave the monks a chunk of inherited money, but when she left, disillusioned, a year later, they refused to give back the money. Soon afterward, she began translating the Bible, intent on showing the pope that all existing translations were in error, since they had provided the ethical guidelines for the monks who had treated her badly. Bible translation became her sole mission in life. A part-time secretary, she lived like a nun in her apartment, translating and translating, sending her work to the pope, but her compulsions betrayed her. Instead of getting even with the monks, she developed bizarre behaviors that became her only purpose in a lonely life.
FORGIVING OCD TOGETHER
When families work together, however, wonderful things can result. One patient told me that she got better with her husband’s help: “Together we forgave my OCD.”
Lara, who has violent thoughts about knives, says that she tends to withdraw when she is obsessing, to become quiet, sullen, sad. Her husband will say, “Lara, stop obsessing. I can see the wheels turning in your head. Stop it.” This Relabeling helps snap her back to reality. He gets upset, she says, only because the OCD causes her so much pain. And he is protective. “If there’s a horrible accident on TV, like a plane crash, well, he knows I’m kind of drawn to catastrophic things, so he’ll say, ‘You don’t have to watch that. You’re already afraid of flying’”—another reality check. She has found him to be caring and understanding, and he does not let her OCD frighten him. Sometimes, though, it frightens her in hard-to-explain ways. She and her husband have talked of adopting a baby, but Lara obsesses that the adopted child—who, of course, as yet has neither a name nor a face—will come to harm. “I have a gnawing, pulling, tearing sensation that the child will always be in danger—have an accident, become ill, get kidnapped, or die.” Therefore, the adoption decision has been put on hold.
Carla, who obsessed that she might kill her infant daughter, struggled with intimacy problems in her marriage. “That was the last thing I could think about. OCD takes twenty-four hours a day. I was just trying to survive and function. It was very difficult for him to understand our relationship, and how I had changed.” Before OCD, she had been the superefficient wonder woman, easily coping with her job, volunteer work, and caring for frail parents. With OCD, she could no longer juggle everything and became very frustrated, taking her frustration out partly on her husband. He was puzzled because in fourteen years of marriage, she had always been a take-charge person. Now, she was demanding time off to take care of her own needs, and he wasn’t used to it. “Unfortunately, I didn’t have time to deal with what was going on with me and with him, too. And I didn’t really share what was going on in my head. The details were too scary.”
Family members can be most helpful by offering support, understanding, kindness, patience, and encouragement in doing the Four Steps—but not by pampering or indulging the person’s OCD. Reinforcement is essential; every improvement should be recognized. People with OCD need to feel good about themselves, since it’s been a long time since they’ve done so. What they don’t need is angry criticism; they are already critical enough of themselves. Nor should they be pushed too fast to get well; their goal will be reached by taking a lot of small steps, not giant leaps. Sure, there will be times when the partner is tired and out of patience with OCD and needs his or her own time out. That’s okay, too. There should be no guilt feelings about that—in fact, the person with OCD should encourage it.
Jack, the hand washer, and his wife had some rough spots in their marriage before he sought help. Both she and their daughter were fed up with his continually asking, “Did you wash your hands?” He understands now, “It was like telling someone they’re dirty.” His OCD-warped mind kept thinking that she was somehow going to contaminate the meals she fixed for them, and the thought almost drove him crazy. But he forced himself to stop asking her if she had washed her hands. “It still bothered me, but I figured that if I kept on, it would create a worse catastrophe—like my wife leaving me.” Insights like this can be great motivators for doing the Four Steps.
In treatment, Jack mentioned his frustration that his family didn’t seem to notice how he was improving, that they wanted the OCD to be gone right away. His wife would say, “I know what you’re doing and why you’re doing it, but it’s still driving me crazy.” Before he was diagnosed, she would get angry with him, telling him his hands were going to fall off if he didn’t stop washing, but she just thought he was a little weird. He laughs and says, “Once there’s a diagnosis, once this thing has a name, people know they can bug you about what you’re doing. Before, they don’t know what the heck is going on and they don’t want to ask questions.” He asks, “Can you imagine living with someone who wants to change you all the time, every waking moment? ‘You know why you’re doing that.’ ‘What are you doing in the bathroom?’ ‘Why are you washing again?’ It would drive me crazy, so after a while she took the attitude that I was getting professional help and she sort of laid off. Once she started crying and said, ‘I wish I could help you.’ I told her she was, by being intolerant of my OCD, by not indulging me and just making the OCD worse.” Of course, there are better and worse ways for family members to be “intolerant” of OCD.
Jack’s wife drew the line at going with him to group therapy. She’d say, “Why do I want to go see people doing what you’re doing?” He didn’t push her. “I think a little fear had crept in, too. Before, she’d thought these were just my quirks. But suddenly I had a mental disorder. She didn’t want to think about that.”
Karen recalls that she was frequently so depressed, tense, and frustrated during bad bouts of OCD that she became extremely irritable. “My husband called me a bitch, which infuriated me, since I felt too much of a burden already. So my response was, ‘Well, you certainly ought to be an expert on that. There are enough of them in your family.’” Their fights escalated, and their sex life diminished. In therapy, she learned that her husband also had OCD, which explained why he had tolerated her hoarding all these years.
Because they were kind of coconspirators in this ridiculous ritual of collecting worthless junk, there were no reality checks, and things got to a tragically absurd crisis state. Old friends from out of town came to visit, but could not be invited in, so they all stood around the yard talking. When friends from Canada called to say they were coming to town, Karen and her husband arranged to meet them at her mother’s house. Nevertheless, Karen was terrified that they might show up unexpectedly at her door. “I felt compelled to park our cars several blocks from our house, so they would think we were not at home. We went to bed as soon as it got dark, so they would not be attracted by lights and drop in on us.”
Barbara’s husband was loving and understanding about her checking compulsions, even though he found them difficult to understand. But when she came home and announced that she had the awful feeling that she had hit someone that morning while driving to work, he lost patience. “That was the final straw for him,” she says. “It was too ridiculous, too bizarre, too completely detached from reality. It shook him up, really sent him over the edge.” Whereas she understood that it was just another of OCD’s dirty little tricks, he did not. He snapped, “You would have heard a ‘thunk’ if you’d hit someone with your car. You would have seen a body in the road.” She was stunned by his overreaction: “I knew it was the same thing, whatever this thing was that was happening to me.” Soon afterward, she read a newspaper article describing a person with severe OCD who had the same symptoms as hers. At last, Barbara knew what she had.
As Barbara progressed in self-directed therapy, her husband handled his role well. He refused to check things for her unless she was completely exhausted. Then he might make a joke out of it, announcing, “Check!” This is actually a form of Relabeling. She says, “He knows he can’t fix me, that I have to fix myself. So he never got overinvolved. He is an amazingly tolerant, well-adjusted, normal person. If I’d married someone like myself who had all sorts of dysfunctional family issues, it would have been a disaster. He’s had to deal with other problems, not just my OCD. I was an alcoholic and had to recover from that. I had a crippling self-esteem issue. I had a lot of baggage before OCD.” That baggage included a mother with mild OCD who used to send her daughter back into the house to double-check the stove before they could leave. Barbara admits, “I didn’t even go into the kitchen. I’d come back and say, ‘Oh, yeah, Mom, it’s off.’” What irony—years later Barbara would ask her husband to check the stove for her.
Today, Barbara’s OCD is very mild and under control. But when it was at its worst, her husband was there for her. “I could unload on him and decompress, and he’d just sit there patiently and talk to me until I felt better.” He did complain occasionally, “You know, you’re not connecting with the world. You’re in a cocoon. You have no involvement with the world or other people. It doesn’t matter to you that you live in a vacuum.” True, sometimes she would just lie in bed on weekends. Sometimes he would come in and hang out with her; other times he wouldn’t. Barbara has since had a baby and quit her job. Now that she’s started to feel less stressed out, she is initiating social contacts and is becoming much more interested in the outside world.
The fifteen-minute rule is very helpful in enhancing communication between family members and the person with OCD. If family members can say in a supportive way, and it must be done in a therapeutic manner—“Let’s just wait fifteen minutes. I’m not going to do this for you now, but I’ll do it in fifteen minutes. I know your OCD is really bothering you right now, but let’s just wait fifteen minutes and see how it goes”—the person with OCD is apt to reevaluate the situation at the end of that period. Again, this intervention must be approached with goodwill, or it will only make things worse.
DON’T PUSH, DON’T RUSH
Because they have had years of practice, people with OCD are clever at hiding their illness when it is to their benefit. A number of people have told us that for many months into an intimate relationship, they had no reason to suspect that their partner had a mental disorder. There may be quirky little behaviors that can be shrugged off and rationalized. Domingo’s ex-girlfriend, Kathy, told of how, very early in their relationship, Domingo had a bad OCD day. She knew almost nothing about OCD and had no idea what to do. “It was like, ‘Oh, my God, oh, my God,’ I didn’t know the magic words to tell him to get him out of it, and I’d be saying all the wrong things, everything that would make him angry.” Sometimes Domingo would make light of it, telling her, “Why don’t you just get naked and stand in front of me, so my mind’s thinking of something else?” When his OCD was that bad, she said, she was willing to try anything to snap him out of it, but “nothing short of a bomb going off next to him would help.”
She laughed as she told us, “The funny thing is, our dog has the same anxious behaviors. You know how they say animals pick up your personality? Well, it’s weird. This dog is a real clingalong. He has to be next to us all the time. We created a monster. If we leave and he has to stay home, his breathing gets funny, and he starts licking and gets this really goofy look on his face. It reminds me of Domingo’s anxious feelings. I tell him, ‘You two guys are just the same.’” There is, however, no clinical evidence to show that dogs of people with OCD develop OCD.
Moving can be traumatic for people with OCD, as can any disruption of their routine. Frequently, they resist the idea of travel, especially when they have contamination obsessions. Travel means using public bathrooms and sleeping in beds where strangers have slept. Domingo bought himself a $500 mountain bike and fixed it just the way he wanted it, but when Kathy suggested a day’s outing to the mountains, she practically had to drag him and his bike out the door. He remembered, “I was afraid the bike would get scratches on it. But, the funny part is, when I went to the mountains, suddenly it was not my bicycle, so I was able to enjoy riding it. I didn’t care if I broke it or scratched it. OCD is weird.”
Although Domingo and Kathy lived together as a couple, they each had a bedroom. She used to tease him and call his room “the mausoleum,” a space where he had his precious collection of art objects arranged just so. She knew better than to rearrange anything. “If I ever clean his things,” she said, “it just freaks him out. He has to go and check for damage. I don’t even do his laundry. I’m a terrible washer. I tend to get bleach spots on things, and he freaks out about that, too.”
Kathy came to see that Domingo’s resistance to change and disruption in his life had an unexpected side benefit. She told us, “If he didn’t have OCD, he’d probably have ten girlfriends because he is, by nature, very promiscuous. But because of the OCD—and this is the part I love—he’s faithful. He’s Latin, right? But if he wanted to cheat on me, he’d have to tell me. For one thing, there’s the contamination thing. He’d have to tell me if he’d touched somebody else.” Domingo confirmed what she said. “Once I’m used to something—somebody—my anxiety gets less and less. With somebody new, I have to start from the beginning. Those of us with OCD are different. We get used to things.” There is security in familiarity.
Kathy used to come to our family support group, where she met parents and family members of other people with OCD. Many of them had been through hell with OCD and, Kathy remembers, “a lot of them were wondering what I was doing with Domingo. They couldn’t understand why I would be involved with this guy if I had a choice not to be. I wasn’t born to it. I wasn’t a parent.” The answer was that, OCD or no OCD, she appreciated him for his good qualities.
It’s not that they didn’t go through some tough times. Kathy’s natural instinct was to pull away, to withdraw, when she saw the OCD coming on. “I would be like, ‘Oh, God, I’ve got to get out of here. I can’t deal with this. How can I deal with this for the rest of my life?’” But when she asked me what her role should be, I told her that if she chose to be with Domingo, she had to take an interest and be involved in his treatment.
After five years, Domingo and Kathy split up for reasons other than his OCD. It was a terrible time for him, and he suffered a relapse in treatment. He explained, “I get used to people and things very fast. If that pattern is broken, my peace has been broken. Then I have to struggle a little so I can get my peace back.” He recently married a woman he met after the breakup. Ironically, they met when he went to a health-food store to buy the weight-gain supplement that Kathy insisted he continue to take. The first time his wife met him, she told him later, she sensed there was something “different” and “interesting” about him. He took her out to dinner and laid it all out for her about his OCD. She had never heard of OCD and really didn’t understand, but she is learning. Domingo told her right off, “Never push me, never rush me, or you can expect me to get aggressive. Don’t ever tell me, ‘Hurry up!’ because that brings out my bad side. I get really mad when people rush me because they don’t understand what I’m going through”: why it takes so long for him to do simple things like put on a pair of socks or take a shower. Domingo gets lost in his ruminations. If he sees a catsup spot on his pants, he may obsess that it is blood and stare at it until his mind understands that it is only catsup.
“Don’t rush me” is good advice for anyone living with a person who is struggling with OCD symptoms.
JILL AND HER DAUGHTERS
When Jill’s older daughter, Erica, was 11 years old, Jill’s best friend died in a car crash. Jill was devastated—the two women had worked together in a real estate office and often shared confidences over dinner afterward—but Jill could not go to the morgue to identify Marilyn’s body, nor would she attend the memorial service. She couldn’t. If she had, her whole world would have become “contaminated.”
The day Marilyn died, Jill remembers coming home to find both her daughters—Erica and 8-year-old Tracy—at the door waiting for her. “They were crying and I was crying and they reached out to hug me and I said, ‘Stay away from me. I’m dirty.’” Jill then took her clothes off, right there, and went in to shower.
She stayed in the house for weeks. “I couldn’t go anywhere where Marilyn and I had been together. It was the contamination thing.” For more than twenty-five years—since she was a teenager and had to go to the open-casket funeral of her boyfriend’s best friend—Jill had suffered from contamination fears tied to death and dying. Though it would be years before she would be diagnosed, she was suffering from severe OCD.
The day of Marilyn’s memorial service, the unthinkable happened: Knowing that Jill was devastated by the loss, friends dropped by to bring her a fruit basket. When Jill peeked out the window and saw them standing there, she told Erica and Tracy not to open the door. These were the people who had identified Marilyn’s body for the coroner. They were contaminated. The fruit basket was contaminated. Jill, her daughters, and her house would be contaminated if they came inside.
“It was horrible,” Jill says. “All I could do was stand there and say, ‘I can’t take it, I can’t take it, I can’t take it!’ But I wanted to take it, so finally I told Erica to open the door, take the basket, take it into the bathroom, and stand in the tub. My friends left, and here was Erica, just standing there in the tub, holding this basket of fruit. I didn’t know what to do with it. She was contaminated and the basket was contaminated.”
It was Erica who jolted her back to reality, screaming, “Mom, you can’t just wash Marilyn down the drain!”
Jill told Erica to put the basket on top of the refrigerator, where she could see it but couldn’t touch it, and then to take a long shower. The basket stayed on the refrigerator for a long time and then Jill threw the fruit away. But the memory of that day has stayed with Erica and Tracy.
Tracy listened recently as Jill told that story. She is now 22, and only in the past few years has she been able to let go of the anger she felt toward her mother for what her mother did to her and her sister when they were growing up—the bizarre cleaning rituals; the moves from city to city and state to state, in search of a place that wasn’t “dirty” and the embarrassment of trying to explain to their friends why they could never come into the house.
Jill married when she was only 18; by the time she was 20, she had two babies. Several years later, she and her husband divorced. Stress piled on stress. She was a single mother now, trying to hold down a job, and she was sick. She didn’t know what this sickness was, but she knew it wasn’t normal. She knew it wasn’t normal to talk to relatives through a closed door or to forbid her girls to kiss their grandfather because he was a meatcutter and had touched blood. Sad and depressed, she wouldn’t leave the house for months on end except to buy groceries or drive the girls somewhere.
For sixteen years, she cut off all contact with her mother, father, brother, and sisters. They were contaminated, and she couldn’t even talk to them by telephone. Jill, Erica, and Tracy moved repeatedly because whole neighborhoods and whole towns would be contaminated.
Tracy is able to laugh now as she remembers, “We always had to find a two-closet apartment.” Setting aside one closet as the “dirty closet” was Jill’s way of dealing with the fact that her girls had to go to school—where they could become contaminated. She devised a routine to keep them and the house “clean”: When the girls came home from school, Jill would open the door to let them in. They weren’t allowed to touch the doorknob. They would then tiptoe through the house to the “dirty closet,” where they would strip off their clothes and dump their book bags. They would then tiptoe to the bathroom to shower. If they had homework, the routine was a bit more complicated. They would have to sit in the closet with the door open doing their homework. Then they could shower. Jill, of course, never went near the “dirty closet.” Tracy remembers that if she or her sister had to use the bathroom while doing homework, they would have to shower first (to keep the bathroom clean), go back to the closet to finish their work, and then shower again.
Erica and Tracy went to a private school and missed a whole year of school when the family’s finances got tight. Jill was always in a bit of a Catch-22. “If I got very sick, I couldn’t work because I was spending all my time cleaning. We’d have to move a lot because we couldn’t pay the rent.”
When they were very young, the girls just thought, “Oh, well, this is what everybody does.” Later, though, they had a hard time explaining their mother’s peculiar behavior to their friends. Certainly, their friends found it puzzling that they were never invited in. “Mom would tell us stories to tell people,” Tracy remembers, “how to make excuses for this or that. It bothered me a lot, the peer thing. ‘How come your mom can’t take us all to the skating rink tonight?’” Tracy would mumble something about, “Well, she just can’t.”
When Tracy was in third grade, her whole school became “contaminated.” If she or her sister had to go the principal’s office, that was a kind of double-dip contamination. Tracy says, “I remember one time when I knew I was going to have to go in and see the principal. It was a Catholic school, and I was really religious at that time. And I was really praying to God that I wouldn’t get called into the office because I knew that then I would have to go through all this extra nonsense.” A trip to the principal’s office meant two or four showers when they got home—always an even number.
Tracy began telling little lies. When interrogated by Jill, she would say she hadn’t been to the principal’s office when she had. Sometimes she’d sneak a schoolbook out of the “dirty closet” and take it into her bedroom to study.
When Jill found out her daughters were lying, “This rage would come over me. Now, everything was dirty because I had no idea where they’d really been or what they had touched after they’d been there. I’d get itchy all over and start hyperventilating.” When Tracy was in ninth grade, she broke her silence and told her best friend about these strange things her mom did. “It was a breakthrough for me, finally talking to somebody.” Her friend told the other girls, of course. Pretty soon the girls at school were joking, “Hey, I think it’s so cool. Can I come over and stand in your closet with you?” To Tracy, it was not funny.
The girls hated their mother’s OCD—but they learned to use it to their advantage. Tracy says, “Erica and I would tell her, ‘If you’re not going to let our friends come over, then you need to give us money to go out.’” They weren’t allowed to earn money by baby-sitting because the child or the child’s family might be contaminated. Though Jill was struggling to keep afloat financially, she would give them what they wanted.
There was no logic, of course, to Jill’s obsession about contamination, and this fact was thoroughly confusing to the girls. Tracy recalls, “Erica and I used to spend a lot of time asking her, ‘Well, how come this is dirty now and it wasn’t dirty before?’” If a “contaminated” person should telephone, Jill would spend hours scrubbing the wall by the phone while dirty dishes piled up in the sink. “That’s what would make my children really upset. Sometimes I would even take all my clothes off first, so I wouldn’t have to clean them. They’d come home and find me standing there, naked, with a paper towel and a bottle of rubbing alcohol. It was bizarre. They’d say, ‘Mom, you’re an alcoholic.’ And, of course, seeing them get upset would make me upset. It’s terrible when your kids are ashamed of you.”
“I hated her,” Tracy says. “I would tell her all the time, ‘I hate you. I hate you for making me do this.’ OCD affected every little thing in my life—the lying to people, the conflict I felt. When she’d make me shower four times, I’d tell myself, ‘I’m doing this because I love her.’ And then I hated her. I’m still like that now. I’ve hit her, I got so angry. And I love her. I don’t want to hit my mom.”
Once, for a lark, Tracy and a girlfriend decided to hang out one night in a graveyard. When Jill asked where they’d been—as she always did—Tracy told her the truth. For weeks, Jill dwelled on it: graveyard-death-contamination. When Tracy’s girlfriend later came by to visit while Jill was out, she knew she had to lie about it. There wouldn’t have been enough alcohol in the world to make the house clean again. As it was, Tracy says, “We’d go up to the city and buy literally cases and cases of alcohol—three, four, five cases. By that stage, all she was doing was cleaning.”
Things had gotten out of hand, and the girls were fed up. Tracy was 16 and the family was living in North Carolina when “the big blowup” came. Erica confronted Jill and told her that she and Tracy had been lying to her for years, doing things she’d told them not to do and not doing things she’d told them to do. “We told her, ‘We’re not going to live with this. We’re not going to have a life like this,’” and they left, going to stay with families of school friends. Jill was devastated. She knew she couldn’t have them with her if they were going to betray her, but she was too sick to really understand what she had done to them.
Erica, who was 19, did not come back. She and Tracy took an apartment, but after a while Tracy came home. “I missed her. I loved her. I felt bad for her. I knew she was hurting.”
The homecoming, of course, triggered a massive “alcoholing” of the house, since Tracy was now badly contaminated. Jill remembers, “I ended up cleaning the cat, too.” Tracy says, “We’re talking even books, page by page, and photo albums. My award certificates from school got smeared with alcohol and had to be thrown out. It killed me. I was very mad at my sister for having us tell mom all that because she had destroyed everything and now I had to come back and pick up the pieces.” Jill, unhappy and depressed, had been thinking that life might be better in Florida. She decided to drive south and take a look. But first, all their possessions had to be drenched in alcohol before she put them into storage.
It was spring break, and while her mother went to Florida, Tracy planned to go to Montgomery, Alabama, to visit former school friends, but she knew that to Jill, Montgomery was “really dirty.” So she lied. She told her mother she was going to visit other friends in Savannah, Georgia. They made plans to rendezvous in Florida. But Jill became suspicious and, en route to Florida, called Tracy’s friends. Her worst fears were confirmed: Tracy had gone to Montgomery, after all. Jill “felt betrayed a second time. It was breaking my heart that they could just lie to me like that. And I was still so confused about my disease.” Tracy was now contaminated; they could no longer live together. Tracy says, “She couldn’t even talk to Erica or me on the phone.”
Eventually, Jill and Tracy sort of worked things out and, for a while, were sharing an apartment near the UCLA campus, where Tracy is a student. For years, Erica and Jill were estranged. Erica had trouble forgiving her. She lives in a different section of the country, and they have seen each other only once in the past five years, but they have spoken by telephone. Jill understands, “She still has a lot of the old hostilities. But things have mended. She no longer blames me for taking her family away. Understanding that I have this disease has taken a lot of the pressure off. She’s forgiven me. She knows that it’s a sickness, not me.”
Although Jill and Tracy haven’t totally resolved their conflict, they’re working at it. When Jill’s compulsions affect her, it makes Tracy angry—“I don’t want to be a weirdo.” Deep inside, she’s a little scared that she may have some OCD tendencies. Tracy herself has a little problem dealing with death and dying and is extremely squeamish about what she will eat.
Jill has shared with Tracy what she has learned about OCD and its treatment from me and from other members of the OCD therapy group, which she attends faithfully. Recently, Jill got a traffic ticket and was taking a driving-school-at-home program. There was one problem: She couldn’t touch the manual because of an old contamination obsession about official papers that started at the time of her divorce. (When Erica was 16 and wanted to get her driver’s license, she had to wait three years because Jill couldn’t go into the department of motor vehicles, an official building.) So Tracy flipped the pages for her. But at the end, Tracy told her, “OK, you’ve got to sign it.” And she did. Tracy said, “Well, since you signed it, do you want to go ahead and try to touch it?” Tracy, seeing that Jill was nervous and jittery, thought a minute and then told her mother, “I think it would be really cool if you touched it. And you’ll get a big gold star.” It wasn’t easy, but Jill reached down and touched the manual. “Suddenly” Jill said, “my hands and arms got all these red splotches, and I was itching between my fingers, but I knew I wanted to touch it. I had to—for my behavioral therapy.”
Today, Jill’s obsessions and compulsions are largely under control. She no longer “alcohols” her house. Her mother’s death two years ago caused a setback—her family members, who had become uncontaminated, suddenly became contaminated again.
But she’s working on that problem, practicing her therapy every day. “You know,” she says, “I’ve always had a real strong survival instinct.”
BRIAN AND HIS WIFE
For most of the fourteen years of their marriage, Sara has shared Brian with his OCD, his morbid fear of battery acid, and his compulsive need to scrub public streets to avoid being contaminated by it.
She minces no words as she talks about her husband, his illness, and how it has essentially destroyed their marriage: “OCD has ruined my life. It steals your husband. It steals your lover, your companion, your friend. It steals your time, money, and energy. It takes all there is to take and gives nothing back. And it never says ‘thanks.’”
Sara and Brian met at the office where they both worked and had known each other six years before they married. In all that time, she had seen no signs of his illness. But they had been married only a few months when she began to notice strange little behaviors—“He’d ask me not to walk in certain places, drive certain places, wear certain shoes”—but she was able to convince herself that these were simply his little eccentricities.
Of course, there were those long, long showers he’d take, but, again, she just “put it down to his being very neat.”
Then, when they’d been married about a year, there was a battery spill at work, and, she remembers, “He just went ballistic” and had to be hospitalized. The gates of hell had just opened for both of them.
Night after night, Brian would lie in bed, listening for the sirens that would tell him that there was an accident nearby. He was always on the alert, ready to grab a bucket and baking soda and drive to the scene and start scrubbing.
Sometimes, Sara said, he would be in the middle of a sentence when he would hear those sirens and would just jump up and disappear for five hours, forgetting even to close the front door in his panic.
The family—which included his son and her son by previous marriages—was being torn apart by OCD. “My kids didn’t know what was going on,” Brian says, “All they knew was that dad was deathly afraid of batteries and battery acid and that I wasn’t fit to go out in public. I mean, it was terrible. Terrible. If my wife could have left me and not felt guilty, she’d have done it. I couldn’t do anything. I wanted to crawl under a rock.”
Of course, the boys couldn’t have friends over because Brian couldn’t control where those friends might have driven or where they might drive next. Once, they came home from school and confided in Sara, “Man, we did chemical experiments today and we had sulfuric acid everywhere.” That was a secret they kept from Brian, knowing he would grab the boys on the spot and start scrubbing them down. Looking back, Brian says, “My son was real anxious to join the Marine Corps. I think he just wanted to get away from me, get away from the problem.”
As his OCD progressed, Brian could no longer work. “I was an absolute basket case. I felt like acid was all over me and I couldn’t get clean. It was in my bedroom, it was on the walls. One day a friend of my wife came to the house and I learned that he’d driven down a street where there’d just been a traffic accident. Now it was on his tires. I spent all night on my hands and knees, washing the carpets with baking soda and water. Then I rented one of those vacuum things at the market and cleaned and cleaned.”
Brian says, “It got to the point where this thing was just completely out of the stratosphere.” He was scrubbing streets all night long, waking up exhausted, and then starting the cycle all over again.
Was he crazy? Was she crazy? Sara was so confused by this time that she wasn’t sure.
Some nights, he would sit in front of the TV, watching The Late Show and then hours of late-late shows, hoping somehow to postpone the dawn and another day of fear and scrubbing.
He sought psychiatric help, but was given a laundry list of misdiagnoses, including schizophrenia. Thirty days in a psychiatric hospital did little good, nor did another two weeks in a second hospital. “Nobody had a clue” as to what was wrong with him, Brian says. Their solution seemed to be “to give me lots of stuff to make me sleep.”
He remembers almost nothing about the first five months of 1985. “Sara told me later that people we knew had died during that time, while I just lay in bed, absolutely zoned out. I had tremendous bouts of depression and I would cry frantically because I was just going crazy inside.”
Then one night they happened to be watching 20/20 on television, when there was a feature on people with OCD. Sara recalled, “I was so relieved that this thing had a name.” Brian said, “A bell went off.” He now knew what he had. The feature had mentioned the UCLA outpatient program for OCD patients, and Brian called. When he got hold of me, he was so relieved that he broke down and cried.
Brian’s is a classic, and severe, case of OCD, and his progress has been up-and-down, depending on how faithfully he takes his medication and how faithfully he practices the Four Steps of behavioral therapy and attends the OCD therapy groups.
If he works hard at it, he is able to keep his symptoms under control, but he has failed to learn the most important lesson: Only constant vigilance defeats OCD. Until he does, he will suffer the consequences, and Sara will have to suffer with him. When his OCD is really bad, Sara says, it is so extreme that “he uses paper towels and sandwich bags to open doors. And we can’t go to church because there is a man there who owns a battery company.” As long as Brian takes Paxil in the prescribed dosage, he is able to fight off depression and suicidal tendencies.
When she feels able to face the consequences—which almost inevitably include angry outbursts—Sara tries to force him to confront reality, to acknowledge that this thing that is bothering him is not battery acid—it is OCD. Sometimes he will, sometimes he won’t. Most of the time, he won’t. She says, “OCD is this giant monster that sits over in the corner. He’s eating us alive, but we’re not supposed to notice.”
The acid problem is, in itself, hard enough to live with. Sara says, “He has ruined more things trying to prevent acid contamination than if we’d sprayed daily with the stuff.” Their driveway and lawn are inundated with baking soda and ammonia. He even cleans under the bushes. The sinks are pitted from the ammonia, and Sara says she expects the pipes to disintegrate and collapse some day.
“We spend three to four hundred dollars a month on baking soda and ammonia. It’s so frustrating to watch the waste. It’s ruined our clothes, shoes, and carpet.” Brian watches where she walks and may decide later to retrieve her shoes from her closet and clean them. He turned a favorite pair of blue suede shoes a hideous green by dousing them in ammonia.
The money wasted is money they cannot afford to throw away. He was a partner in a car dealership that fell victim to overexpansion, recession, and the rerouting of a major freeway in the early 1990s. It was a financial disaster that left him broke. Because of his OCD, his job performance since has been shaky. His current sales job requires a great deal of driving—and he cannot keep appointments with clients if he finds that he will have to drive on streets where there might have been an acid spill.
Although money is tight, Brian still feels compelled to buy things he doesn’t need. His closet is filled with suits and ties he’s never worn. “He doesn’t want to get them contaminated,” Sara explains. Once, she went to a department store to buy him a birthday gift and, undecided, asked the saleswoman for an idea. When the saleswoman suggested a tie, Sara quickly chose something else. As the saleswoman was ringing up the purchase, she noticed the name on the credit card and said, “No, he sure doesn’t need a tie.” She recognized him as the man who couldn’t stop buying ties.
Brian buys hammers and other tools in duplicate and once had to rent a garage to store all the stuff he was hoarding. Sara observes, “We could have put his son through college with what he’s invested on this disease.”
He will buy and buy—and then a great guilt will seize him. Because he has OCD, he will reason, he must deny himself everything. “Everything,” Sara says, “shampoos, haircuts…but then he will reward himself to the same extent that he has denied himself” and the buy-and-scrimp cycle will repeat.
But the greater toll on his family has been the emotional one. “If you’re sick from the neck down, everyone will help you,” Sara says. “If you are sick up above, there is this shame. A woman stays with her husband who’s terminally ill and she’s a saint. But I’m told I’ve got to be ‘out of my mind’ to stay with Brian. I ask people, ‘Would I not be kind to him if he had polio or heart disease?’”
Many times, angry and frustrated, she has thought of leaving. “I’ve actually gotten in the car and driven until my gas tank was almost empty, not knowing where I was going. Finally, I’d pull over and wonder, ‘Where am I?’
“I’ve told him I want a divorce. That’s when he starts taking his pills by the gallon and calls the doctor and starts going to the group.” But only until the marital crisis blows over.
There are many reasons why she has stayed: She is 56, and this is her third marriage; her first husband was a schizophrenic, her second an alcoholic. There is the matter of commitment. “He needs me terribly.” And, she says, “Even the unstable, if it’s constant, becomes secure.”
When he is himself, she knows, he is a kind, loving, and charming man—the man she married, the man he was before he became so overwhelmed by his disease and not able to think of anything but his own needs.
Sara hates the role she is forced to play in her marriage. “I have become the mother, the watchdog, the critic. I hound. I nag. I try to control. I cry. I give up. Then there is nothing. Just apathy and sadness. What a waste—of him, of me, of time, money, everything.”
Most of all, there is the dreadful loneliness. “I am alone most of the time, whether Brian is home or not. He doesn’t think of me anymore. He is always thinking his own thoughts, always thinking of battery acid. I have never experienced loneliness like this. Even being divorced was not this lonely.”
Most of the time, she is “contaminated,” so physical intimacy between them is out of the question. “He won’t even touch anything I have touched or use the same towel or the same cup.” The problem is compounded by the fact that she works at an auto dealership. In Brian’s mind, that means only one thing: battery acid.
Sometimes, she has reached out to hug him and has seen “stark terror” on his face. Or she might take his arm, and “he just recoils.” Over time, she has learned to stifle her feelings, not to initiate any show of affection, so as not to be rebuffed. “I am no longer an equal, no longer feminine, no longer a love object.”
“OCD isolates you like no other disease,” Sara says. “It tries to keep your family and friends away. You can’t plan get-togethers or holidays. It controls where you drive, walk, shop, see movies, every aspect of your life. Nothing is left untouched.”
She smiles and says, “If I didn’t have a sense of humor, I’d have done myself in—or him.”
When he gets really bad—which is when he slacks off on his medication and behavior therapy—she worries that he will be suicidal. “I don’t want to come home from work,” she says, “and wonder if he’s hung himself in the garage.”
Sometimes Sara struggles to keep her sanity. She will sit and recite multiplication tables, just to focus on something besides his illness. For three years, she was in therapy. And, she has taken up hobbies with a vengeance—“I craft myself to death.”
But her real strength comes from “a deep, abiding religious faith,” combined with coping skills she learned from living with an alcoholic. “I will relive the good times mentally and use them over and over” to get through the bad times.
Still, she has to take medication to control her heart palpitations. And she overeats: “I haven’t yet learned that food doesn’t cure anything.” Once, when Brian was out of town, she ordered pounds of pasta from a favorite Italian restaurant where they cannot go because it is “contaminated” and systematically ate her way through all of it.
A few years back, Brian and Sara decided to take their sons to Hawaii. “The vacation that I’d dreamed about,” Brian says. “I thought we were going to have a great time.” But the second day, they decided to take an offshore snorkeling excursion. As luck would have it, the owner of the boat asked everyone to remove his or her shoes before boarding. He then opened a storage compartment and put the shoes inside. Brian froze when he saw that there were batteries stored in that compartment.
From that moment, Sara says, “Everything we had on was contaminated and everything we bought was contaminated. It ruined the whole vacation.”
“I was living in a virtual hell for the whole five or six days we were there,” Brian recalls. “I didn’t even wear my shoes off the boat. I just left them there. But I couldn’t possibly clean everywhere where my kids wore their tennis shoes and I wasn’t going to grab their shoes off their feet and get them new ones.”
For a long time, Sara was very supportive of Brian. At his most desperate, he considered having brain surgery, but she talked him out of it. By the time he sought help at UCLA, she had consulted an attorney about a divorce. Brian states, “I begged her to do it. I said, ‘Honey, I don’t see me getting any better and I can’t possibly put you through this for the rest of your life. Go out and find somebody else. Let’s get this thing over with.’”
She didn’t. For one thing, she didn’t think he could make it on his own. And she worried constantly that he would take his own life. Brian remembers, “I had bought that book that tells 450 ways to kill yourself. I’d learned how to cut my wrists and all sorts of other things. I never tried but, boy, I sure contemplated it. I remember telling a doctor at UCLA, ‘You know how bad I am today? I’m so bad that there’s not a person in one of those beds on the cancer ward that I wouldn’t change places with.’”
Sara talks about her weariness, her loneliness. Sometimes she is just too tired to fight his OCD, so she gives in to it, even though she knows that will not help him to get well.
She says, “I’ve tried not to buy into his illness, not to be codependent, not to be an enabler. But those times the house becomes a true war zone. There is no peace. So, if he thinks there is battery acid on a certain street, I agree not to drive on it so he can have peace of mind. I’m running around the edges, trying to keep everything peaceful.” When she feels strong enough, she will force the issue and make him confront his disease. And he will go back to doing his behavior therapy and taking his medication. Then things markedly improve.
The worst part, Sara says, is that “he’s in this alone and I’m in it alone.” Rare are the occasions when he’s honest about what’s bothering him—it’s not battery acid, it’s OCD—but at those times she feels very comforted. Most of the time, “the beast is eating both of us, and we’re both pretending that it’s not touching anybody.”
Sara longs to hear Brian say, “You’re great for staying with me,” but he never does. She doesn’t think he understands what he’s putting her through. After all, he is the one who gets up at night to scrub the streets, not her. Her friends tell her, “You’ve got to have your head examined.” But she cannot bear to think “what he would be like and live like without me.” So she stays.
Because he knows where he can get help, she is hopeful that sooner or later he will decide to conquer his disease because he must—for his sake and for theirs. Meanwhile, she says, “He’s wasting his life, and I’m wasting mine watching him wasting his. I want him back with me. I want us to be in this together. I’m sure he’s lonely, the same as I am.”
It’s not easy to know why Brian continues to go through such extended periods of noncompliance with his medication and behavior therapy when it is obvious to everyone, including him, that he shows consistent and marked improvement when he complies. From a classical psychotherapy perspective, it’s clear that he has “emotional conflicts” about getting better, but it has not been easy getting to the root of what they are. The pattern of his cooperation with his treatment plan is somewhat hopeful in that the periods of remission are getting somewhat longer, but things remain much too inconsistent.
The moral of this story is that not everyone avails themselves to the same degree of the opportunity to get better. Some people seem to cling to their suffering more than do others. We are hopeful that Brian will eventually sort himself out and follow the combined medication-behavior therapy treatment regimen that has proved effective for him.
JOEL AND HIS PARENTS
Steven and Carol, both academics, at first indulged their 14-year-old son, Joel, in his newfound interest in subscribing to newspapers from different cities.
What they didn’t know was that Joel had no intellectual interest in those newspapers. In fact, he wasn’t even reading them. He was hoarding them. Stacks and stacks of newspapers were piling up in his room. “It was a real fire hazard,” Joel says.
Carol remembers, “If you went into his room, it would hit you in the face, this tremendous, overpowering smell. And you’d suddenly realize that it was newsprint.” Carol and Steven did the logical thing: They took the newspapers—by then thousands of pounds of newspapers—out into the yard and asked Joel to sort out the ones he wished to keep. He started to make choices but then, she says, “he just kind of cracked up. He couldn’t do it.” Even though he never read those papers, he was obsessed with the idea that he “had to preserve this information.” For a long time, Joel was able to rationalize that his “collecting” made sense.
His parents thought it was a bit odd. They had no way of knowing that it was, in reality, the first stage of an OCD hoarding compulsion that was to get completely out of control. Soon, Carol says, “We started to find old food containers. He was saving things like McDonald’s wrappers. I’d root around and find them all over the house. At first, Steven thought, ‘Okay, he’s making a collection,’ and he’d allow him to keep one sample of each.” But before long, Joel would be scouting the alley, sifting through other people’s trash cans in search of food wrappers. And then he began hoarding junk mail. Carol had to take all the junk mail to school as soon as it came to the house and dispose of it there.
Obviously, Carol and Steven were beginning to see a disturbing pattern in their son’s behavior, yet they were completely puzzled about what might be going on in his head. Thinking back, they recalled an episode several years earlier that had seemed harmless at the beginning: Joel had suddenly taken an interest in making videotapes. But his was no normal teenage experimentation. Soon he was taping compulsively and indiscriminately; the recorder was on all day long. Of course, he never played any of the tapes. Taping in and of itself had become a life-consuming activity.
Joel explained his hoarding by saying that he was into recycling, but, Carol noticed, “Nothing actually got recycled.” It just got stashed away.
To their relief, the hoarding obsession eventually began to go away. Joel did not throw away the mounds of junk in his room—he was too sick to deal with it—but he stopped bringing in more junk. Carol and Steven reasoned, “Well, maybe this was just an adolescent problem.” They consulted a psychiatrist who suggested that coming-of-age pressures and anger can cause teenagers to do all manner of strange things.
Life seemed to move along quite normally for several years, and then, on Joel’s 16th birthday, Carol and Steven took him to his favorite restaurant for dinner. But Joel couldn’t eat. They asked to change tables, thinking that might help, but Joel was able to force down only a few forkfuls. Joel explained that he had been thinking for some time about converting to an organic vegetarian diet and now, all of a sudden, he felt confused and put off by his food. Like many young people, he had interests and concerns about the environment that were leading him in the direction of not wanting to see animals killed for meat. Carol and Steven understood; certainly didn’t object; and, in fact, tried to incorporate his new dietary preferences into their lifestyle as much as was practical. At this stage, Joel would still drink milk and would eat meat occasionally if someone else had prepared it.
Soon, however, Joel began to exhibit signs of extreme worry over things being “unclean.” He began washing his hands repeatedly, using huge quantities of water, and taking long showers. Carol and Steven began to suspect that it was more than an ecological awareness that was behind Joel’s ever-more-rigid eating habits. Later, they would understand that he had started to equate “nonorganic” with “unclean.” He had begun to spend hours sorting through vegetables at health-food stores. Once he brought the vegetables home, he would have to wash them for hours. Even after the greens became limp and soggy, he couldn’t always bring himself to believe that they were clean enough to eat. Steven remembers, “It was not only the vegetarianism, which we could understand, but the minute examination of every possible contaminant, these long, agonizing sessions.” Joel was going through a growth spurt and was quite thin for his height, and his parents began to worry that he was starting to become undernourished.
About this time, the compulsive washing was getting out of control. Whereas he had always been extremely punctual, now Joel could not get to school on time. Whenever he was leaving the house, Steven recalled, “he had to go through increasingly lengthy sessions of washing. They got longer and longer and more intense. He couldn’t explain, except to say that he had to. I didn’t know what to do. Shouting wouldn’t have done any good, obviously. That would have just made him more anxious and maybe would have made it worse. Once or twice I thought, ‘Well, look, maybe I can shock him out of this by turning off the main shutoff valve and cutting off the water.’ Well, that created terrible consternation. And, in the end, it didn’t really save anything because things got so bad that he couldn’t go out if he couldn’t wash, so it was just a vicious cycle. Eventually, I realized, of course, that this wasn’t helping. Not only that, but I couldn’t do that more than once or twice without breaking the plumbing. You know, if you keep turning the main valve off and back on, you’ve got trouble. So I gave up on that.”
Now, Carol and Steven knew that whatever this power was that had taken control of their son, it was stronger than any of them.
Everyone’s life was being turned upside down. Because Joel could not dry his hands on towels others might have used, he took to just shaking his hands and letting the water splash on the floor. He would let the water rise so high in the sink when he washed that it would slosh over. Both Carol and Steven slipped on the wet floors and fell. They had to buy big commercial mops to combat the deluge. Joel’s hands were getting raw and red. Looking back, they describe life at home during that time as “an endurance contest.” Joel couldn’t pinpoint the “contamination.” It wasn’t a fear of germs, exactly, but just a feeling of “ick spreading everywhere. One thing would touch another thing that would touch another thing.”
He could not sit down to a meal without first jumping up to wash and rewash his plate and utensils. Carol and Steven emptied the kitchen cupboards, relined them, and washed all the dishes in the dishwasher before replacing them. It proved to be wasted effort because Joel was still not convinced that things were clean.
Pretty soon, he began avoiding going to the bathroom, so he would not have to wash his hands afterward. At school, he remembers, “I didn’t go to the bathroom at all because I didn’t want people to see me wash my hands over and over. Of course, they must have known that something was wrong with me because I was arriving at school ten, twenty, or thirty minutes late with my hands white from soap.”
By now, Joel was washing his clothes compulsively, as well. Carol says, “He would take seven or eight hours to wash them and then he had to wash the dryer before he could put them in.” She could no longer be trusted to wash his clothes properly. As he took each item out of the dryer separately (with one hand), he would rush upstairs to his room with it, holding it at arm’s length as though it were about to explode, touching nothing on the way. Water rationing was in effect in parched southern California, and the family was exceeding its quota by far and being penalized. Steven installed water-saving taps and showerheads, but it was futile. Joel—who before his illness had been very drought conscious—just let the water run longer. Carol and Steven would make little jokes about Howard Hughes, but to no avail. Joel was going through piles of towels and huge amounts of non-animal-based soap. Carol says, “We were beginning to live in fear that they were going to turn off our water.” In desperation, Steven rigged up a lock for the clothes washer. Joel broke it off. Sometimes he would hang over the washing machine, compulsively turning the controls for hours. One time, out of patience, Steven hit him, hoping to bring him back to reality. But deep down, he knew that would not help. Steven tried to take away the towels that Joel had laid on the floor to absorb the overflow from the sink as he washed. Joel went into a panic and began knocking over chairs and tables.
Joel had been seeing a psychiatrist who told Carol and Steven that if the situation got totally out of control, they might have to call the police. They figured this was such a situation and dialed 911. Joel responded by striking Carol, trying to tear the phone off the wall, and running outdoors. He was gone when the police arrived.
Clearly, a crisis point had been reached. By now, Joel could touch nothing after washing and rewashing his hands. He took to using his knee to change channels on the television and would try to “knee” his way out of the house to go to school. Whereas once he had hoarded newspapers, now he couldn’t read a newspaper because he couldn’t stand to get newsprint on his hands.
Joel had abandoned all of his hobbies, including amateur radio and gardening, to concentrate on his compulsions. Ironically, while he expended all this energy on keeping himself and his food clean, his room was becoming a disaster area because of his inability to touch anything “dirty.” Stacks and stacks of newspapers sat in the backyard, untouched, but if anyone suggested throwing them away, Joel would panic and start screaming. He rarely smiled anymore or communicated with his parents, except in a combative and adversarial way. He had begun to realize that he was losing control of his life, that he was letting his schoolwork slip—he had always been a top student—and he cried frequently, wringing his hands in frustration. He was a senior in high school, but had little interest in senior activities and left college applications unopened. An entire day could be spent doing laundry and bathing.
Joel’s food fears were increasing. He could still drink milk, but only one brand. His compulsive washing left him no time for breakfast or lunch. He insisted on cooking his own vegetarian dinner, but this was a long and messy process because he could now use only one hand, even after repeatedly washing both. Salads were out, since he could not get the greens clean enough. His skin was becoming more and more irritated, but when Carol and Steven tried to cure the washing problem by refusing to buy more of his special soap, he started using his shampoo to wash. He spent much of his time standing around with his arms bent and his hands clenched, doing nothing and avoiding touching anything. Whereas he once enjoyed riding his bike to the health-food store, he now had to be driven there. One day, Carol and Steven came home to find Joel standing in the dark, hands clenched, unable to bring himself to touch the light switch. His shoes were a disgrace, but he rejected the idea of new shoes. New shoes would be stiff—and dirty—and he would have to touch them to put them on instead of just stepping on them and forcing his feet into them.
Carol and Steven tried to get Joel to talk about his anxieties, but he would either remain silent or change the subject. Only general, light conversation was possible.
Inevitably, all this turmoil began to be reflected in plummeting grades. Whereas once Joel had been extremely organized and his work very thorough, his reports and papers were now last-minute efforts banged out on the computer with little thought or fact-finding. (His keyboard and mouse could still be touched.) Rarely was he able to concentrate well enough to study for exams. Fortunately, he had applied to several University of California campuses before he was incapacitated by his OCD, and several acceptances had arrived. Carol and Steven urged him to read the literature, thinking it would boost his ego, but he showed little interest. Ultimately, after a perfunctory visit to several campuses, he decided—without much enthusiasm—on San Diego. With his lackluster senior-year grades, his parents feared that UCSD might withdraw its offer—or that, at the last minute, Joel would decide just to stay home and do nothing.
As a family, Carol, Steven, and Joel rarely sat down together for a meal. It was too nerve-racking. If either parent prepared food in Joel’s presence, there was a long battle about whether it was clean. Carol and Steven began to describe his fixation as “molecularism”—if there could possibly be contamination, no matter how small or how imaginary, an object was unclean and unusable. Joel could not wear any clothes if they accidentally touched the floor or if Carol or Steven touched them. His washing compulsion escalated. The drains began to spring leaks, and Steven would have to place buckets beneath them and empty them regularly. The wall behind the sink was constantly drenched from Joel throwing water against it to clean it. Crumpled paper towels by the hundreds were scattered around the house. Carol and Steven were becoming hostages in their own home. “We found ourselves snacking our food when it wouldn’t agitate him. He couldn’t stand to have us near him in the house.” Joel complained incessantly that “the house is dirty.” In reality, it was he who was making it so, dropping things everywhere.
Joel’s food obsessions were getting worse. Because everything was unclean—including his parents—he could eat nothing that they had cooked. And he could eat nothing off their plates or utensils. He had begun to subsist on commercially packaged organic vegetarian meals and organic juices drunk straight from the bottle. By now, he could not use the telephone or open a door. The movies were his only recreation. He would take the bus to the movie theater, carrying with him his own special snack food.
There were frequent family explosions. Joel was frustrated and angry. On the one hand, he had the normal teenager’s love-hate relationship with his parents, but, on the other hand, he was also abnormally dependent on them in ludicrous ways—for example, to open a door. Physically, he was exhausted from long hours of compulsive activity and a diet that was totally out of balance. He no longer slept in his bed, but just fell asleep stretched across a chair, exhausted. Later, as his obsessive rituals became too painful, he took to sleeping in a sleeping bag to avoid having to shower and change his clothes come morning.
To make matters worse, he had developed an obsession that certain areas of the house were infested with imaginary bugs. Steven had to buy him a package of throwaway plastic gloves because even his computer was now sometimes contaminated. But Joel would complain that the gloves weren’t long enough or that bug “particles” had somehow found their way inside the gloves.
His senior class at school was taking a trip to Europe, but Joel had no interest in going. He all but crawled on his knees through his last year of high school.
Just before Joel lost the ability to function at all—when he could still go outside—he happened upon Judith Rapoport’s The Boy Who Couldn’t Stop Washing at a campus bookstore and eagerly flipped through the pages. About the same time, Carol stumbled on the book and brought home several copies. She and Steven devoured it from cover to cover, but Joel could not; he couldn’t pick up anything that they had touched. All three of them now knew what Joel had, and after a number of inquiries, Carol and Steven were able to get him to contact me at UCLA. “That,” says Steven, “is the first time we got the full picture. That was the beginning of our understanding.”
Joel began to comprehend that he had a medical problem caused by a chemical imbalance in the brain, but his physical reserve was so low that he could do little to combat it. By this time, he was housebound. He couldn’t go out without showering, but he hadn’t the stamina to face the ordeal of an eight-or ten-hour shower. One Saturday morning Joel awakened Steven; he was sobbing and explained that he’d had a nocturnal emission and would now have to shower. Steven agreed and suggested some shortcuts that might curtail the length of the shower, but to no avail. On that occasion, Joel showered for seven hours.
Joel still washed his hands repeatedly, but couldn’t bring himself to turn off the faucets when he finished and risk getting his hands dirty all over again. One day, Carol and Steven came home to find that the faucet had been running all day. Sometimes Joel would wake them up at night, pleading for one of them to turn off the faucet.
He could no longer drink tap water, only bottled. With greater urgency and frequency, he would ask his parents to make special trips to buy emergency food or drink or special anticontamination supplies. They rejected or deferred many of these appeals, repeatedly reminding Joel that they had a limited capacity to cater to his illogical needs.
His showering ritual had become so painful that he simply stopped showering. The very thought of starting a shower was, in Joel’s mind, a challenge of the magnitude of “crossing the desert” on foot. “Once,” Steven remembers, “he went twenty-one days before he built up the courage to take a shower. And that was only so we could take him to the hospital.” All along, Joel had firmly rejected the idea of medication because medicine might be contaminated. Everyone, including Joel, had come to realize that hospitalization was his only hope. He wasn’t functioning. He was, as he says, “frozen.”
Taking that shower was a milestone. Steven says, “It takes a heck of a lot of courage to do these things when your OCD is so bad. You know, it’s easy to say to somebody, ‘Come on, why don’t you take a shower and get out of here?’ But it’s horrible, it’s just horrible. He told us how he would get into the shower and start washing, but then some part that he’d washed would get dripped on and he’d have to rewash. He would even get to the point where he’d almost pass out in the shower because of the hot steam. And of course, his body would be just raw afterward. When he went into the hospital, the outer layer of skin on his hands and arms was basically gone, all the way up beyond the elbow.”
Joel was in the hospital for ten weeks, which wiped out the family’s medical insurance for “mental disorders.” Because he had finished high school, even though he wasn’t yet 18, he was placed in the adult ward, which was very important to him because it meant he could be part of my group. In the hospital, everything was monitored, including the length of patients’ showers. Steven says, “They had a big, beefy guy who hauled people out of showers naked. They had to do that.” The therapy included exposure-and-response-prevention exercises wherein Joel would be told to touch “contaminated” objects, such as bathroom doorknobs.
For weeks, Joel made tiny improvements, would reach a plateau, and then would make another series of small improvements. During this time, he got up the courage to try medication, which helped to relieve his anxiety. Still, there were crises in the hospital; strangers would touch his clothing, and he would demand of his parents, “Take it away. I can’t deal with it.” Repeatedly, he would ask Carol and Steven to bring him brand-new clothing and to throw out the old. They knew they could never satisfy his demands because the new clothing would have to be brought in “uncontaminated” packages. They knew, too, that they would wind up spending all their time bringing clothing to the hospital, that they could not afford to replace everything that had been laundered by the staff and thus rendered unwearable. They actually considered presenting him with an ultimatum: Either he wore what was there or he could wear hospital gowns. But they knew this would be too upsetting and humiliating to someone with his anxieties. Ultimately, they hit on a plan to bring one set of “clean” clothing on each visit. They would seal it tightly and give it to a staff person to give directly to Joel. This seemed to work.
Just before the end of the ten weeks, Joel’s condition took a significant turn for the better. Once home, he was determined not to regress. He began going faithfully to the OCD outpatient program at UCLA and to the weekly meetings of the OCD therapy group. He still had multiple anxieties, but he was able to control his compulsive rituals. If he found himself starting to think contamination thoughts, he would force himself to Refocus on something else. The family’s awful episode was behind them. After about six months of work on his behavior therapy as an outpatient, the washing compulsions were 99 percent gone. Joel was able to enroll at UCLA, even though he was still struggling with concentration problems.
The moment of truth, Carol says, was when Joel said one day, “I’ve decided that I can’t be better than other people. I’m not going to be able to be cleaner than other people.” And she knew he was going to be okay when he did the hardest thing of all: He touched the flusher on the toilet. Steven says, “Joel was extremely fortunate to be able to get to the right help, the right people, so quickly. If he hadn’t gotten into a good treatment program early on—less than a year after he had clear-cut OCD—it could have gone on for years and years.” Of course, having parents who sought appropriate treatment and persisted in their support as he worked on his behavior therapy also played a critical role.
Carol and Steven remain alert to any signs of backsliding and will confront Joel right away if they notice, say, that he is having trouble deciding whether he is washing something the “right” way. He is usually able to reassure them that everything is under control. He has become very effective at Relabeling and Active Revaluing. As a matter of choice, he still eats a vegetarian diet, but he can eat off plates and utensils like everyone else.
Because he was having concentration problems, Joel temporarily dropped out of college and took a volunteer job at UCLA Medical Center, which led to a part-time paid job. In private psychiatric counseling, he began working on overcoming such things as performance anxiety. Steven resisted the urge to ask his son, “Why don’t you just do X-Y-Z? Why don’t you try to concentrate?” He knew, “It isn’t that easy for someone who’s been through all this. For him, it’s work, hard work. He’s a young guy, and he’s been through a lot. What difference does it make if he goes to college this quarter or next quarter?” In time, Joel was strong enough to leave home and enroll at a large out-of-state university, where he is studying computer sciences.
“This terrible episode is behind us,” Steven says. “He’ll find himself.”
ANNA AND HER BOYFRIEND
Anna’s earliest memory of having a major obsession was when she was in fifth grade and at Girl Scout camp. She had looked forward to having a wonderful time, as she had at past camps. But one day a girl who was bunking nearby happened to tell Anna about her sister, who had a severe kidney disease, and to describe the symptoms in vivid detail. Anna says, “For days, the thought of this sick sister whom I had never met stuck in my mind and refused to leave. It didn’t make a lot of sense that I would feel so bad about a total stranger, but I did.” Camp became a sad experience, and it wasn’t until Anna returned home that she was able to put these painful thoughts away.
Years later, an equally inexplicable and illogical obsessional thought—this one focused on unfounded fears and doubts about her boyfriend’s faithfulness—would drive him up the wall and almost lead to the breakup of their relationship before she learned that she was not a jealous shrew, she was a woman with severe OCD.
As a child, Anna was a worrier and, for most of her life, she had suffered from anxieties and insecurities. During her sophomore year in high school, she had her first real romance, with a good-looking boy a year ahead of her. They started going steady. “We decided we loved each other. We confided the most intimate details of our lives to each other.” One day, he confessed to her that he liked to masturbate while looking at a picture of supermodel Cheryl Tiegs in a bikini. Anna began to obsess about this, over and over picturing him doing this, until she would become sick to her stomach. “Why am I thinking this?” she asked herself, but she couldn’t find an answer. Later, she learned that it was more her boyfriend’s suppressed homosexuality than her lack of sex appeal that made him fantasize about Tiegs while being less than amorous toward her. Still, it was hard for her to shake her obsession with Tiegs. It was the late 1970s, and Tiegs’s picture was everywhere. Each time she saw it, Anna felt a wave of revulsion combined with a fear that her intense obsessions would flare up again.
Anna analyzed herself and decided that she was hypersensitive and jealous by nature and wondered how she’d ever be able to sustain relationships with men in the future if such trivial issues were so painful to her. In college, she became involved with a man who was a drug abuser. Although she tried to be open-minded about his drug habit at first, she soon began to ruminate on it. She had to know how he used drugs and with whom. Somehow, she got it in her mind that his drug problem was her fault. This thought led her to see a school psychiatrist who, on the basis of a fifteen-minute consultation, concluded that her real problem was that she was obsessed with her mother’s breasts. Anna, quite rightly, didn’t see what possible connection there was between such an obsession and her ruminations and increasingly frequent panic attacks.
Eventually, she was diagnosed with agoraphobia, an abnormal fear of leaving home. This is not an uncommon complication in people who get spontaneous panic attacks. “I was told that my panic attacks were probably due to having been raised in a perfectionist household and never having been taught to express anger effectively.” Although we now believe that panic attacks, like OCD, are due mainly to biological factors, that explanation eased her fears that she’d gone crazy. Assertiveness training and exposure therapy to situations and places that brought on the attacks—such as crowds or dark spaces—eased her awful symptoms, the feelings of terror, the fear that she was having a heart attack.
Although she and her boyfriend had long since broken up, she still obsessed off and on about his drug habit. Then, the summer after college graduation, Anna was seized by a new, more overwhelming, obsession: death. “I began to wonder how anyone could make it through the day, knowing that sooner or later death would choke off life and make existence meaningless.” She began to search for signs that she was losing her mind.
She went on to graduate school and met Guy. “Each time I had been involved romantically for any length of time, obsessions had resulted. By the time I met Guy, my less-than-healthy relationships with men in the past had made me especially sensitive to trouble, and I worried about the possible ways a man could destroy me, even if unwittingly. I knew I was prone to selecting men with serious problems of their own, and too many times I had felt the effects of this on my delicate mental balance. Ironically, it was probably this desire to protect myself from hurt that led to my most intense bout ever with OCD.”
Guy was the innocent victim.
“For once,” Anna says, “I had selected a trustworthy and supportive companion. Then I started in on him. First, I became obsessed with the idea that he had used drugs”—he hadn’t—“and questioned him endlessly about this. Though he was faithful and loving, I began to obsess about his past romantic history”—even about whether he had ever read girlie magazines. Scores of conversations would begin with, “Have you been in love before?” “When exactly did you see this person last?” “Why don’t you see her anymore?” “Do you think about her?” Anna wanted to know when he had looked at the magazines, why, where the magazines had come from, when he last looked at one, when he first looked at one, the total number of times he had looked at them, and which magazines.
And she demanded instant answers. “Not surprisingly,” she says, “Guy hated these conversations, which would end with both of us angry. He was angry because he felt I was needlessly suspicious and distrustful. My anger stemmed from the feeling that his answers were vague and obstructionist.” She spent hours checking and rechecking his answers, mentally reciting the facts he’d told her, searching for any discrepancies. “Often, hearing an answer once wasn’t enough. If he gave an answer to a question I had already asked, and that answer didn’t fit exactly with his previous account, this caused me tremendous mental anguish. I took these inconsistencies as proof that Guy had initially been untruthful.”
Guy felt bewildered and mistreated. Anna felt vulnerable, fearful, and ashamed that she couldn’t control herself. By the time they had been dating for about a year, she had begun to develop psychosomatic ailments and was contemplating suicide, in an abstract sort of way. She had read about a man suffering from mental problems who had shot himself in the head and miraculously “cured” himself by eliminating the rotten spot in his brain, a distorted and misleading account, as it turned out. “I fantasized about a similar cure for myself.” She was now convinced that she was, at heart, a shrewish, jealous, demanding, difficult, unhappy person—and she hated that person.
As a teenager, Guy had lived in Europe, and together they made a summer trip that included visits to his old haunts and reunions with old friends. Anna was consumed with a need to know exactly what role they’d played in his life. How long had he known the women? Had he dated them in high school? “I would always start out by answering her,” Guy says, “but by the fifth time she asked the question, it got to be completely stupid. I would ask her, ‘Why are you asking me this?’ And she’d just say, ‘I need to know. I need to be sure.’” Sometimes, he would answer her in an offhanded, abstract fashion, thinking that would satisfy her: “Oh, I saw her for the last time three years ago in August.” But later, in casual conversation, the woman would mention that it was actually four years ago or that it was July instead of August, and Anna would begin another barrage of questioning.
In her mind, one of two things had to be happening to her: Either Guy was lying to her or she was going crazy. Because she never wrote down all the details of his answers, she was never quite sure whether the discrepancies in his answers were real or imagined. So she would want him to prove that she had just imagined that he’d told her different stories.
Anna hit upon a solution. She told Guy she was going to start writing down everything he told her. At this point he put his foot down. “No, you’re not. That’s the worst thing you could do.” He was right. He says, “I knew if she asked me, ‘Did you ever go out and get drunk with this person?’ I could say yes or no, and that was that. But if I said no and then she asked me, ‘Well, when was the last time you saw this person?’ I would probably not be able to say in the kind of detail she thought was necessary,” and she would launch into another round of harassment.
During the first years of their relationship, they made several trips to Europe, where his family lived. Although he didn’t know it at the time, Guy began to use behavior therapy to help Anna. He recognized that if she got too tired, this obsession of hers “would be ready to pounce,” so he tried to plan their travel accordingly. He also planned their daily activities ahead, understanding that when she was busy, she was not asking all those silly questions.
On their second trip abroad, they stayed with his family in their small home. That turned out to be a mistake. Guy’s mother thought her son had brought home a severely disturbed young woman and had little patience with her strange problems. She had much bigger worries—her husband had recently suffered a heart attack. She made her impatience obvious, which of course only increased Anna’s stress and exacerbated her OCD obsessions. Guy’s mother would tell her, “Well, deep down you must really want to be doing this. There must be some special urge in you.” Anna, in desperation, would tell her, “No, no! You don’t understand.” The conflict was making both Anna and Guy miserable. “I just lost it,” Anna says. “I wanted to kill myself because I was obsessing and obsessing and starting to do all these really crazy things. I just became obsessed with trying to reconstruct his life before me—although he’d actually had an extremely tame life before me.”
She grilled him about every woman he had ever dated. “What did she look like?” “What did you eat when you went out with her?” “Where exactly did you go?” What did they have for an appetizer, main course, dessert? Did they sit down to eat at noon or four minutes past? What did they talk about? Anna was distraught. “I had no idea what was going on and I felt really horrible because I was basically torturing my boyfriend with all these crazy questions. He got very upset. He thought I was just doing it for fun or something. He is a very sensitive guy and he thought I didn’t trust him, which in a way was true. But neither of us knew what this thing was. We had no clue. I had already been through therapy for my panic attacks, so I knew what panic attacks were, but this was something totally new. [About 10–15 percent of people with OCD get panic attacks as well.] I knew there was something seriously wrong and that I had to see a psychiatrist, but I was in Europe, so I had to sort of live through the rest of that summer.”
Deep down, she knew that Guy was “a really steady, nice guy.” She’d never seen any untoward behavior; in all the time she’d known him, she’d never even seen him drink too much. Deep down, she understood that because of her own insecurities, she was trying to sabotage a wonderful relationship. What she did not know was that she had OCD. That summer, when she was at her worst, Guy asked her to marry him. “Really crazy, huh?” he laughs now. Soon, however, both began having serious doubts about a future together. Anna remembers, “We had a number of confrontations where I was screaming at him, saying he’d lied to me because I’d asked him if something had happened on Wednesday or Thursday or whatever and he would have gotten it wrong. I’d think, ‘Okay. I’m going to have to break up with this guy. He’s lying.’” In reality, he was just trying to get her off his back. He wouldn’t remember each answer he’d given her, but she would.
Back in Los Angeles, they sought help for her and were referred to me at the UCLA Neuropsychiatric Institute. By this time, they were living together and were both in stressful periods of their lives. She was in graduate school, and he was starting a job in academia—a job to which he could not devote full attention. Guy looks back on this time as “sort of a daze. We were trying to get through this mess, and I wasn’t sure whether Anna was the problem or if I was totally incompetent as a teacher.”
I diagnosed a classic case of OCD. This was nine years ago, and Anna was one of the first patients to whom I was able to explain, with some certainty, that the problem was the chemical imbalance in her brain I call “Brain Lock.” Told that she had a brain disease, Anna was greatly relieved and anxious to begin treatment. The Four Steps of behavior therapy had not yet fully evolved, but for the first time I applied the fifteen-minute rule in a systematic fashion.
Whereas family members sometimes try to sabotage the treatment of a person with OCD because they are fearful that the person will change, will refuse to continue to be the family doormat, or whatever, Guy was eager to help Anna. He understood, “This was not the person I loved. This was not her doing these crazy things. It was happening to her, and she was in pain.” Early in treatment, there were many times when it would have been easier for him just to answer her questions, but he understood that doing so would not help her get well. So he set some ground rules: He would answer one question, not a long string of them, and then make her wait fifteen minutes before he would answer another. They would fight, and she would cry, but Guy had the insight to see that the fifteen-minute rule was more than just a waiting period; it was an implicit recognition that her questions were ridiculous, that they weren’t her—they were her OCD.
He says, “It was hard for her to choose who to trust. When I said, ‘This is your OCD,’ she would demand to know if maybe it was just a question that I didn’t want to answer.” He constantly reassured her, “It’s just the OCD. Don’t worry about it.” Very calmly, he would tell her, “I can answer your questions if you really want me to,” but he would always remind her that the problem was not her need to know the answers. Her problem was OCD. “The first three months were just traumatic, the antagonism between her and me.” She would stalk out of the room, slamming the door, or just sit on the bed crying. Since they lived in a small apartment, each would give the other space, literally and figuratively. One would go into the kitchen and the other into the bedroom for fifteen minutes. Sometimes, Guy acknowledges, they were putting the fifteen-minute rule into play, but not in a constructive manner: “One of us would just go off and sulk for a while.”
As Anna’s treatment progressed, Guy was able to say to her, “Do you really want me to answer your question?” and she would say no. A big step forward. “On those occasions,” Guy says, “she was so happy. We both knew that there was no real point in my answering the question. She’d already asked the question in the past, and I’d already answered it, but she’d forgotten the answer. Therefore, by osmosis, there could be nothing to be worried about.”
Anna hated what OCD had done to her, and she was motivated to work hard to get well. For weeks at a time, she would be able to resist asking questions. He says, “Anna knew that she had to get on with her life and that if she could get rid of this thing, she could.” In the short term, the trade-off was not an easy one to make: fifteen minutes of waiting in very real anguish with the promise of long-term relief versus the very real and immediate relief she could get by asking her questions. Guy says, “Deep inside, Anna knew that it was just her brain doing this to her, so the value of carrying out the compulsion really fell when she identified it as OCD. Every week that goes by, every week that this thing preys on your life, the value of not succumbing to the negative impulse increases. Anna would use words like, ‘I have to remain vigilant.’” Guy knew that she was in terrible pain because she would start frantically checking and rechecking things around the house. She would become moody and withdrawn. “If I’d come home half an hour late, she’d be very upset. I hadn’t done what I said I was going to do when I said I was going to do it.”
As the months went by, she became increasingly confident that she could control the symptoms of OCD. Guy was her partner in behavior therapy. He would say, “Look, you’re getting down because you’re feeling a little bit more of the OCD today. But over the last week, it really hasn’t been that bad.” Or, “It’s been pretty bad this week, I know that.”
Anna had eighteen months of weekly outpatient behavior therapy—with small dosages of medication as her waterwings. During this time, she says, “Guy learned a lot about how to handle me. Before, he used to just get mad and say, ‘You’re torturing me. Stop doing this.’ But once he realized what it was, he was very strong about saying to me, ‘I am not going to participate in this obsession. I am not going to answer your questions. You can do whatever you want, you won’t make me answer these questions. So take your fifteen minutes, come back in fifteen minutes, and we’ll talk.’ I credit him a lot for my recovery. So many family members are just not helpful at all, but he was really there for me, pointing out when it was OCD. Many times, of course, I didn’t believe him. I’d say, ‘Oh, no, it’s not. This is real. I really need some help.’ And I’d be desperate for him to answer one of my questions or to verify some fact—but he just wouldn’t do it. I got very mad at him sometimes, but it helped. It really helped. Before treatment, this would have infuriated me as a suspicious obstruction. Now, however, I could see it was a positive step for my own good.”
Guy is well aware of how much effort Anna—with his help—put into getting well. “In some ways,” he says, “we were lucky because I was implicated just by the very nature of her OCD. It’s not clear to me that if she’d had a serious hand-washing problem, I’d have been involved in quite the same way. It was easy for me to see that there was a problem and to participate in the therapy because I was so involved.”
Now and then, Anna still has one of her crazy thoughts. They tend to be “What if?” questions that are unanswerable. Lying in bed one night, she began obsessing, “What if my husband is gay?” But she quickly turned to Guy and told him she was having this crazy thought and that she knew it was OCD. He said, “Yeah, you’re right. It’s OCD. It’s ridiculous.” And he went back to sleep.
Anna completed a demanding doctoral program, and both she and Guy have rewarding teaching careers. They have been happily married for four years and have a baby.
Anna now describes her life as “normal.”
KEY POINTS TO REMEMBER
• OCD always involves the family.
• Be aware of how OCD symptoms affect your loved ones.
• Be aware of using OCD symptoms as a way of distancing yourself from the needs of your loved ones.
• Avoid at all costs using OCD symptoms as a way of demonstrating anger or annoyance at your loved ones.
• Help family members learn more about OCD and the Four Steps to help them avoid nonproductive criticism and facilitating your symptoms.
• Family members can make excellent cotherapists. Encourage them to help, not criticize.
• Mutual acceptance in the context of constructive interaction is very conducive to improved performance of the Four Steps.