I sit in the glass-walled nurses' station, waiting for my day to begin. A steady stream of people — all living with obsessive-compulsive disorder, or OCD — approach the half door and utter some variation of "I have to go to the bathroom." The attractive young woman on duty smiles and hands over a small quantity of toilet paper, a squirt of soap in a specimen cup, and a paper towel with a cheery "Here you are!" This is what grade school must have seemed like to George Orwell.
Pretty soon I have to go, too. How could I not?
I'm here to interview the doctor, not seek treatment from him, so I'm directed empty-handed to a staff bathroom in which I discover four separate soap dispensers, a forest of paper products, and two signs about washing my hands — one to remind me to do it, and the other to tell me how.
I'm at the Obsessive Compulsive Disorders Institute (OCDI), a residential treatment center in McLean Hospital — Harvard's psychiatric center — to see if my own OCD problem wasn't just my secret but maybe also the secret to my success. All my adult life, intrusive thoughts have alternately halted my progress and saved my ass, and I'd finally like to separate the bad from the good.
The medical director at the center, Michael Jenike, M.D., is both a maverick and a pioneer in the OCD community. He founded this facility, the first of its kind, to help sufferers of what he considers the most agonizing of psychiatric disorders.
"I had a 17-year-old who had kidney cancer that was going to kill him in 5 or 6 months. He also had a bad case of OCD. He said he'd rather get rid of his OCD and live only 6 months, than get rid of the cancer and live with the OCD. That's when it first hit me: This is some serious stuff."
The people seeking treatment at OCDI do not have the minstrel-show version of the disorder acted out by Tony Shalhoub in Monk or Jack Nicholson in As Good as It Gets. The institute's residents are seriously impaired. They have the kind of shattering anxiety that would make the rest of the OCD world — roughly 1 percent of all adults, 2.3 million of them in the United States alone — want to scrub their hands. The real numbers could be even higher, because OCD may be underdiagnosed and undertreated. Half of all OCD cases are serious — and that's the highest percentage among all anxiety disorders. On average, people flail about for 17 years and see three or four doctors before they find the right care.
That horror aside, OCD has become cool. Perhaps it fascinates us because it forces otherwise normal people to carry out insane acts — acts that they know are insane. It has great dramatic tension. We secretly enjoy the dissonance of a perfectly rational man becoming convinced that he is fatally contaminated and washing his hands with bleach and a scrub brush, only to repeat the whole routine 10 minutes later. Paging Lady Macbeth.
And anyway, who wouldn't want a condition David Beckham has, even if it is his signature brand of mental illness? The popularization of the disorder has led to a heap of confusion. Everyone I know is "obsessed" or "compulsive" about something. And then there's the throwaway excuse of our times: "Oh, that's just my OCD."
This casual imprecision only adds to the confusion of talking about OCD. Sanjaya Saxena, M.D., an associate professor of psychiatry and behavioral sciences at the University of California at San Diego and the director of the school's OCD program, points out that "the meanings of 'compulsion' and 'obsession' as we speak of them in common parlance are not the same as the strict mental-health definitions." Obsessing about your work or your girlfriend doesn't mean you have OCD, and most people understand that "compulsively" keeping a neat desk or managing a stock portfolio is no big deal.
More to the point, those everyday fixations do not put you in danger of developing full-blown OCD. Even habits that are worrisome and possibly progressive, such as sex addiction, compulsive gambling, or overdrinking, fall within the spectrum of addictive behavior and not OCD.
Like our common, everyday infatuations, says Dr. Saxena, these habits persist "because they are rewarding in and of their own right." A true obsession, though, is "a recurrent, intrusive fear, impulse, or image that is distressing and anxiety-provoking," he says, while a compulsion is "a repetitive behavior done in response to an obsessional fear or worry and designed to prevent something bad from happening or to reduce distress."
If the behavior produces pleasure or a reward — even a strange or unhealthy reward — it's not a real obsession or compulsion, and it won't develop into one. Gerald Nestadt, M.D., a professor of psychiatry at Johns Hopkins, puts it this way: "The alcoholic may say, 'I shouldn't drink, but I love to,' whereas the person with a contamination obsession would say, 'I don't want to wash my hands, and I wish I could stop.' The reason the addictive person wants to stop is only because of the consequences, not the unwanted urge."
‘The core of all anxiety is uncertainty’
Jonathan does have OCD. He's a bright man, tall, self-possessed, funny, and utterly disabled by a disorder that has steadily taken over his life. He's living at OCDI and doing the hardest work of his life just to quiet the intrusive thoughts and maddening rituals that have been his unwelcome companions since he was 13 years old. If a negative thought — "Is my father going to die?" — intruded while he performed a task, he'd have to repeat the task over and over again until he completed it without the whisper of a bad thought.
If he thought about something bad while closing the car door, says Jonathan, "I'd have to close the car door again. If I had an intrusive thought while I was going over a review on an employee, I had to rewrite it."
We all have intrusive thoughts. They flash unbidden across our mental JumboTrons, startling us with their violence, depravity, or just outright weirdness. I'd bet every New Yorker has imagined hip-checking some stranger into the path of an oncoming subway car, and that every Californian has considered, for one brief moment, the idea of plowing his SUV into the jerk in front of him on the Santa Monica Freeway.
For a person living with OCD, thoughts like these are not wadded up and tossed in the recycling bin. Instead, they are pored over, analyzed, and scrutinized for truth.
Imagine this: You've just parked the car. You hop out, grab your bag, and head toward the gym. But wait. Did you lock the car? You head back to make sure you did. Yup, it's locked. Problem solved.
Jeff Szymanski, Ph.D., OCDI's director of psychological services, explains. "Someone with OCD says, 'I went and checked the car, but did I really check it? I'm looking at my hand turning the key in the lock, but is that perception really clear enough? Did I hear the click, or do I just remember hearing the click, or did I hear the click last time I checked this?'"
Shrinks call this pathological doubting, but the person with OCD doesn't need a memo from the Department of Justice to know it's torture.
Looking back, I realize that my OCD began to appear during my senior year of high school, if not earlier. I became convinced that every girl I dated was betraying me... nightly. And so I quizzed them on their whereabouts and demanded alibis for any unexplained absences. Oddly enough, my girlfriends found this suffocating.
My condition confined itself to that strange little corner of my world throughout my college years, and I did just fine. There are some tolerant females out there, let me tell you. But after I graduated, found a job, and moved to New York, I promptly dissolved into a puddle of anxiety.
"The core of OCD and the core of all anxiety is uncertainty. In uncertainty there is the potential for danger," Szymanski says. "OCD really has its field day in stress and in transition. Every time people with OCD go through a change, they're stuck with uncertainty. They want to make themselves certain, and they spend all their time replaying what-if scenarios."
Hell, yeah. I spent 3 years of my life wondering if I had AIDS, hepatitis, and every other infection (despite my no-risk behavior and double-digit blood tests). I called the AIDS hotline so often that a counselor finally yelled at me to get off the phone — "You're worried," he said, "but the guy on the other line is dying." I lost whole days of my young adulthood thinking about what I touched, if I had a cut on my hand when I touched it, or if I'd touched my mouth or eyes before washing. Then I'd replay the whole series of events: Did I wash well enough? Am I sure I didn't have a cut?
I lived in an Escher print.
When I tell Dr. Jenike these details, I don't get the "you freak!" reaction I still brace myself for. "Whatever's the most repugnant to you, that's often what the obsessive thoughts get stuck on," he says. "Like a mother nursing a baby — the mother will think I want to have sex with my baby and be horrified. It seems like OCD is looking for the most repulsive thing to torture people with."
For me, it stopped right there. I never developed the typical hand-washing, repeated-shaving, stove-checking, counting, or touching compulsions. I did not graduate to the level of thinking, "If I do this, then the thing I'm anxious about won't happen." But my girlfriend suspicions and infection worries were plenty bad enough.
Szymanski suggests thinking about it this way: "OCD rituals sound crazy. But find a place within yourself where you experience a negative emotion so powerful that you're willing to do anything — sell your mother — to get away from that emotion. Even if that behavior makes you look crazy to other people. That's the feeling of OCD."
That feeling finally drove me to a psychopharmacologist, who hit a homer on the first pitch. Prozac wiped out my symptoms within a couple of weeks. I could feel my brain returning to normal.
But most people dealing with OCD require a two-pronged approach of medication (in the form of selective serotonin reuptake inhibitors — SSRIs — like Prozac, Luvox, or Zoloft) and a Kafkaesque form of therapy called exposure and response prevention, or ERP. In ERP, a person learns to tolerate repeated exposure to the very cue that triggers the anxiety without acting out the attending ritual. It's administered in stages, with each stage ratcheting up the exposure.
At OCDI, residents work at dealing with their condition for hours and hours each day, all the while agreeing not to carry out the compulsive behaviors that they once used to temporarily neutralize the power of their thoughts. Each ERP is designed to address a particular obsession or compulsion. Compulsive washers will touch toilets and not be allowed to wash.
Jonathan had to listen to a loop tape, hearing, "I hope my mother will die today" while he pursued activities he enjoyed, "because the thoughts are just thoughts, there's no credence to that happening." He seems agitated and a little rote when he says this, as if the "cure" hasn't quite taken hold.
Repeated exposure to the source of the anxiety, the theory goes, will desensitize a person to it, robbing it of emotional power. In one memorable example, a person with an obsessional fear of stabbing someone was placed in ever greater proximity to knives. Eventually he graduated to standing behind an OCDI staff member for 90 minutes, holding a knife at the ready for a fatal thrust.
No one knows for certain what goes on inside the brain of a person living with OCD, but science is coming much closer to an answer. According to S. Evelyn Stewart, M.D., an assistant professor of psychiatry at Harvard medical school, brain imaging has revealed a biological underpinning for OCD: An overactive loop runs from the brain's decision center (or orbitofrontal cortex) to its movement-governing center (thalamus) and into the basal ganglia, which governs the off switch for thoughts and behaviors.
In primitive times, obsessive-compulsive traits conferred real advantages to humans. Some elementary fear of pestilence and contamination, the prevention of harm, and the concern about necessities probably set the upwardly mobile cave dweller on the route to success.
Similarly, these traits can give you a leg up in today's workplace, as long as you stop shy of the destructive behaviors that mark the disorder. If you tell a job interviewer that you are obsessed with your work, compulsively neat, and utterly scrupulous, chances are you'll impress him or her with your ability and not your insanity. Double-checking a manuscript can prevent you from leaving a critical "l" out of somebody's public-service award. And I challenge you to find a successful salesman who is not more than a little over the top about closing a deal.
Living with the uncertainty
Vladimir Coric, M.D., an associate clinical professor of psychiatry at Yale medical school, runs Yale's OCD research clinic.
He believes that "having some obsessive-compulsive traits can be adaptive in some circumstances and contribute to one's success. If you don't worry about the expectations of your boss and the details of your job, you could be fired. It's appropriate to be obsessive and compulsive about important things. If you're able to turn it on and off, it can be a highly adaptive personality trait. If you're not able to turn it off, as with OCD, it can be highly incapacitating."
Preoccupation with detail is like blood pressure: Too much is bad, as is too little.
Most anxiety disorders tend to skew female. Not so for OCD. Men make up 50 percent of the OCD population and, like me, they tend to develop symptoms earlier in life than women do. And given men's propensity to deny mental disorders, the numbers are probably higher.
But obsessions don't control me anymore. Thanks to chemistry, I've evicted the gnome who forever walked the same path in my mind. The rut he wore has grown over, and my attention no longer sinks into his steps. Still, I've carefully husbanded the obsessive-compulsive traits I like — just enough perfectionism on just the right things, plus a healthy dose of anxiety about my performance and how it is viewed. I rely on them to this day.
Of course, I'm one of the lucky ones. I was able to get help, and then pay for it. Whether others will be as fortunate is now being debated in Congress.
Insurance coverage for mental health improved in the wake of the 1996 Mental Health Parity Act. This federal law mandates that the dollar limits set on health-care coverage for psychological problems equal the limits for problems elsewhere in our bodies. But insurers found plenty of loopholes.
Peter Newbould, the director of congressional and political affairs for the American Psychological Association Practice Organization, says he knows the system still isn't working. "If you've visited your general-practice physician about your backache, and he or she refers you to a chiropractor or orthopedic surgeon, you may pay just 20 percent," he says. The coverage for mental disorders is not nearly as generous. "The system has been rigged for many years in a way that disadvantages mental health," Newbould says.
This is especially true for OCD because it isn't a pop-a-pill kind of condition. Effective treatment for even a mild case requires multiple visits with a specially trained therapist. The good people at Your Insurance Company are delighted to reimburse you for these visits, usually up to a total of, ahem, 50 percent of the cost. Oh, and please don't exceed your maximum visits for the year — as few as 20. If you do undergo enough therapy to get better, the bills will drive you crazy all over again.
Help may be on the way. In Congress, Sen. Pete Domenici (R-NM), an architect of the 1996 law, has teamed up with Sen. Ted Kennedy (D-MA) to pass the Mental Health Parity Act of 2007, which is now the topic of compromise discussions between the House and Senate. "It is a matter of fundamental fairness that illnesses of the brain are treated on par with other illnesses like cancer, diabetes, and heart disease," says Domenici, who's retiring this year. With any luck, he'll go out with a parity party.
At the end of my day at the institute, I sat with Szymanski, disturbing the feng shui of his neat (obsessively neat, you might say) office. "Here we have patients write their own eulogies. The idea is to project yourself into the future to answer the question, 'What do I want my life to stand for?' People say, 'I want to contribute to the community.' 'I want to be a good person.' 'I want to be connected to my family.' Right, and you spent 4 hours in the bathroom reshaving yourself. How is that connected to your goal?"
By focusing on their lives instead of their anxieties, patients at OCDI learn to live with the sort of uncertainty that used to cripple them. Jonathan is 31 now, 18 years into a battle with OCD that has cost him nearly everything. He is disabled, but perhaps not for long. Three weeks into his stay, he can envision a better future: "I am a highly motivated person, and I function at a very high level even with the severe OCD. So with these tools I'm learning, the sky's the limit. Right now, I'm trying to figure out which parts are the OCD and which parts are me."
An OCD to-do list: Find therapy, or else!
One in 100 adult Americans has obsessive-compulsive disorder. "Affected people can be normal in every way except this one thing that's totally nuts, and they know it's totally nuts," says Michael Jenike, M.D., medical director of the Obsessive Compulsive Disorders Institute at Harvard University's McLean Hospital.
Sound familiar? The Obsessive Compulsive Foundation recommends finding a therapist who is oriented toward behavioral or cognitive behavioral therapy — ideally, one experienced in a practice called exposure and response prevention (ERP). In this kind of treatment, a patient is exposed to a feared situation, but then refrains from performing the compulsive ritual in response. The therapist should be able to teach you to practice this on your own, as well as introduce you to effective drugs, such as Prozac, Celexa, Lexapro, and Zoloft.
For all that, be prepared for a long haul: It takes an average of 17 years to receive effective treatment.