OCD Causes Many to Suffer in Silence by Carolyn Cosmos A successful, middle-age tax attorney with a large family is having a meal at a restaurant in downtown Washington. Fearful that he might have put poison in the saltshakers on each table, he finds himself surreptitiously collecting and hiding them, tormented by the thought that he might injure someone. These fears arise whenever he eats out, and he has even stolen saltshakers in the past, putting them in his briefcase to protect other restaurant patrons. Deeply shamed by behaviors he realizes are irrational, and afraid of alarming or disgracing his family, he suffers in silence. He has never told anyone about this problem. A young Maryland mother admired for her tireless community work becomes convinced that she might molest her two little girls, although she has no actual interest in doing so. Heterosexual, happily married and deeply religious, she becomes so afraid to even touch the young children who need her that her husband must care for them. She repeatedly confesses to her parish priest and priests in other parishes as well, desperately traveling from church to church seeking relief but unable to find it. A teenage boy who lives in Northern Virginia, a soccer player with a knack for math who pushes himself to get top grades, is driving along a highway. Feeling his car go over a bump, he asks himself, ìWas that a bump? Or a body? Did I run over someone?î He drives back to the spot to check. The next day he calls the local police station and scans newspapers to see if anyone in that area had been hit by a car. In the following weeks, he drives back to that spot in the road to check it out againóand again and again. Realizing his irrational panic, the boyís occasional pot smoking with friends steadily increases as he tries to blot out his terror that he will wind up in a mental hospital instead of an Ivy League college. All of these examples are fictional composites based on the clinical experiences of Dr. Gerald Nestadt, professor of psychiatry and behavioral sciences at The Johns Hopkins University School of Medicine in Baltimore, Md. Although they do not depict actual individuals, they do illustrate the kinds of troubling obsessions and compulsions that haunt people suffering from obsessive compulsive disorder. ìThe typical person with obsessive compulsive disorder, or OCD, thinks theyíre crazy. Theyíre so ashamed and embarrassed by it they may even see a counselor without mentioning it. Thatís very typical,î said Nestadt, who also serves as the director of the Hopkins OCD clinic. Nestadt said that OCD is a highly treatable anxiety disorder and brain disease that typically appears in the teen years or early adulthood, although children can also develop OCD. People with OCD have intrusive, unwanted, unpleasant, and repeated thoughts and impulses that cause them immense distress, such as obsessive worries about dirt. They may be afraid theyíll kill their mother or sleep with their sister or spread germs. They may be scared to touch a toilet with their bare hands, may hoard objects until they pile up apartment rooms with trash, or they might suffer from repeated compulsions to check light switches theyíve turned off or appliances theyíve unplugged. And, in the classic case of OCD, they may suffer from the need to repeatedly wash their handsósometimes hundreds of times a dayóuntil their skin is cracked and raw. How common is it to suffer from this disease? A cross-national study suggests that between 1 percent and 3 percent of the planetís population suffers from OCD, said Nestadt. He noted that the rate in the United States and Canada is 2.3 percent in each country. A Plural Problem Tom Corboy, director of the OCD Center of Los Angeles, emphasizes that there are different kinds of OCD and a wide range of related anxiety disordersóalthough experts strongly disagree on how to classify all the variations. In addition to the ìclassicî OCD that involves, say, compulsive hand washing or repeated lock checking, Corboy said there is also obsessional OCD in which, for instance, a person may harbor such a persistent fear of stabbing someone that they wonít allow scissors or knives in the house, or theyíll lock all their scissors away. There is also a loosely related cluster of disorders sometimes labeled ìobsessive compulsive spectrum disorders,î although one expert interviewed for this story, Jeffrey Schwartz, described the spectrum category as ìnonsense.î This spectrum can include hypochondria, where people are consumed with worries about being sick when they actually are not; trichotillomania, or compulsive hair pulling; a separate skin-picking disorder that resembles hair pulling; and body dysmorphic disorder, in which people worry excessively about their appearance and may have repeated cosmetic surgeries to correct perceived flaws. Some OCD experts also classify compulsive gambling, compulsive shopping and compulsive sex with the OC spectrum disorders. ìIím not one of them,î Corboy said. ìI would say, instead, theyíre an impulse control problem.î With cybersex or shoplifting, he said, people are getting pleasure. In contrast, people with OCD donít find any sort of pleasure in their problems. Adding to OCDís kin list, last December a Kansas City research team linked Prader Willi syndromeóin which people have a short stature, are obese and may be intellectually disabledóto OCD, finding that Prader Willi eating compulsions are caused by genes related to OCD. The work, reported by AScribe Newswire, is being done at the University of Kansas School of Medicine and Childrenís Mercy Hospital. And finally, extreme perfectionists have their own niche completely separate from the ìclassicî form of OCD: Itís called obsessive compulsive personality disorder, or OCP. ìWith OCD,î Corboy said, ìa person will have thoughts that appear to be separate from who they are.î They will have a hand-washing compulsion, for example, and typically have ìgood insight into it, saying to themselves, ëThis is crazy.íî In contrast, he said, with obsessive compulsive personality disorder, people may be extreme perfectionists but instead of thinking, ìThis is crazy,î they think, ìEverybody should be this way.î Corboy added that with OCP, ìthe thoughts donít cause them distress because they think Ö the rest of the world is doing it wrong.î According to the American Psychiatric Associationís Diagnostic and Statistical Manual of Mental Disorders (DSM IV), OCP is ìa pervasive pattern of preoccupation with orderliness, perfectionism, and mental and interpersonal control, at the expense of flexibility, openness, and efficiency.î Such people may be preoccupied with details, lists and schedules to the point where they canít see the forest for the trees, becoming so bogged down in detail and so focused on perfection that they are unable to complete projects. OCP sufferers may insist that others submit to their perfectionist ways. ìUnlike people with OCD, theyíre not tortured,î Corboy said. ìWith OCP, itís their families who are torturedÖ. They may be thinking, ëEven though itís causing my spouse to divorce me, itís a good thing.íî Corboy emphasized that both types of disorders can be highly functional. ìBosses love them. The OCP is the guy whoís working 16 hours a day to get everything just right. The woman with OCD is tortured by her thoughts but can be very successful. I have OCD clients who are successful CEOs.î Corboy noted that hoarding disorder, in which people have difficulty throwing things out and may live in rooms piled high with trash, can be part of OCD proper, or part of the OCP personality disorder, or it can occur independently. ìYou will see it suddenly appear in seniors. Somebody is 80 years old and thereís nothing else wrong with them, and theyíll suddenly start hoarding,î Corboy said. ìOr people will hoard just animals. Theyíll have 250 cats in the house, 50 of them dead and the rest starving. But theyíre not exhibiting other problem behaviors.î Body Dysmorphic Disorder Body Dysmorphic Disorder (BDD) is not nitpicking or fussing about oneís appearance. Itís a serious disorder that puts people who suffer from it at risk for committing suicide. For example, 30 percent of the people in one BDD study group reported at least one attempt at taking their own lives. Diagnosing the disorder can be difficult because ìsufferers often keep their symptoms secret due to embarrassment and shame,î wrote Dr. Katharine A. Phillips and Dr. Ralph S. Albertini in an article for World College Health. Phillips, author of ìThe Broken Mirror,î a book on the subject, is director of the Body Dysmorphic Disorder and Body Image Program and a professor of psychiatry and human behavior at the Brown University Medical School in Rhode Island. Phillips and Albertini said that people with BDD consider minor or nearly invisible physical flaws to be noticeable and ugly, and will obsess about their appearance at least one hour a day, but more typically several hours. Their daily functioning can be impaired. Others may repeatedly turn to plastic surgery to correct their imagined or exaggerated bodily flaws. Although BDD has been linked to depression, the OCD Clinic of Los Angeles notes, ìBDD has obsessive-compulsive features that are quite similar to those of OCD. In fact, one recent study found that 24 percent of those with BDD also had OCD.î Pulling Hairs ìMost people with trichotillomania think, ëI must be crazy,íî said Dr. Angela Neal-Barnett, an associate professor of psychology at Kent State University in Ohio and director of a program for research into anxiety disorders among African Americans. People with ìtrichî have seemingly irresistible urges to pull out the hairs on their head, sometimes to the point of stripping themselves bald. They may also, in some instances, pull out their eyebrows or eyelashes. Noting that people of color who have trichotillomania and OCD are underrepresented in research studies and are less often seen at clinics than their white counterparts, Neal-Barnett has created a groundbreaking outreach program embedded in the idea that all mental health outreach needs to be culturally appropriate, and may work best if clinicians go out to communities rather than wait for patients to come to them. Neal-Barnett is finding, for example, that African-American women with trichotillomania can be found in many beauty shops, and sheís developed a video that educates hairdressers and their customers about the disorder. The disorder is defined in various ways. The Trichotillomania Learning Center in Santa Cruz, Calif., following the DSM, categorizes it as an ìimpulse controlî problem, but others in the field also note that it responds to the same treatments as those used for OCD. What Causes OCD? When it comes to the causes of OCD and related disorders, most experts believe that genetic variables are involved along with learning factors, including the way people have been raised. In addition, according to Corboy, ìSome studies have found a link between rapid-onset OCD, especially in children, and strep infection,î although ìnot everyone with OCD has had strep and not everyone who gets strep develops OCD.î The Johns Hopkins University has been exploring the OCD-genetic factor through a family genetics study since 1995, said Dr. Jack Samuels, assistant professor at The Johns Hopkins University School of Medicine and co-investigator of the OCD family study. ìThe first part of our study was designed to see if OCD runs in families. It does,î Samuels said. ìTwelve percent of the first-degree relatives of people with OCD, that is their parents, children or [brothers and sisters], had OCD disorders,î he reported, compared to the typical 2 percent of close relatives who have OCD among people who donít have the disease. Samuels added that the close relatives of people who did have OCD also tended to have more panic attacks and depression than the relatives of people free of the disease, as well as more tics and disorders, such as hair pulling. ìThere may be a dominant gene involved,î he said, noting that researchers hope to identify that gene in the second phase of the study. One exciting find so far, Samuels said, is that the younger the age of onset of OCD, the more likely it is that a relative will have the disorder too. This suggests that the younger a person is when the disorder first appears, the stronger the genetic component. Like others involved in genetic studies of human diseases, the researchers hope their work will eventually lead to new and improved treatments. ìWe are interested in recruiting more families for the study,î Samuels saidóthat is, recruiting families in which two or more relatives may have OCD. Participants do not need to be U.S. citizens and all information is kept confidential. How OCD Is Treated Experts agree that not only are OCD and many of its related disorders highly treatable, one of these experts, Dr. Jeffrey M. Schwartz, has outlined a popular self-help program for OCD in his book ìBrain Lock: Free Yourself from Obsessive-Compulsive Behavior.î Through self-help alone, using the techniques discussed in the book, ìpeople with motivation can get relief from their OCD symptoms in weeks,î Schwartz told The Washington Diplomat. ìSome of my patients swear by it,î said another OCD clinician, speaking of the self-help book. ìOthers find it less useful.î Said Schwartz, ìWe teach people that their urges are caused by false brain messages they donít need to listen to. Theyíre the victim of bad brain circuits.î If they follow the steps in his book, which are based on standard therapies now used in the treatment of OCD, Schwartz said, ìPeople can activate more healthy brain circuits. They can change their brains.î Brain scans of patients done before and after OCD treatment bear his assertions out, revealing physical changes in the brains of patients who have undergone therapy alone. Corboy, Schwartz, Nestadt and other OCD specialists interviewed for this article all agree that the best treatment for the disorder is a type of cognitive behavioral therapy called ìexposure and response prevention,î or ERP, sometimes used in combination with medications, such as those used to treat depression, including Anafranil, Prozac or Paxil. In ERP therapy, people with OCD are exposed to their obsessions, such as a fear of being a pedophile, while being preventedóor preventing themselvesófrom following through with a compulsive response, such as avoiding schools. A therapist in this case might drive a client to a school parking lot and have them sit there for 15 minutes. Progress can appear relatively quickly, Corboy observed: ìI tell my clients this is not ëWoody Allen therapy.í Youíre not lying on somebodyís couch for 20 years. It typically takes once-a-week [therapy] for four to six months for the average person. There are more intensive programs for the most severe cases, but the treatment for the normal person with OCD is once a week Ö [with] in-between homework. All my clients go out with a list of assignments.î ìWe have scientific evidence that cognitive behavioral therapy alone actually causes chemical changes in the brains of people with OCD,î wrote Schwartz in his book ìBrain Lock.î ìWe have demonstrated that by changing your behavior, you can free yourself from brain lock, change your brain chemistry, and get relief from OCDís terrible symptoms.î Calling OCD a ìdevilish disorderî and a ìliving hellî that was once thought intractable, Schwartz, like many of his clinical colleagues, thinks that OCD is now one of the more treatable disorders in the mental health profession. Carolyn Cosmos is a freelance writer in Washington, D.C.