What we don’t know about OCD

At 13, Arnie got a paper route. The work troubled him, however — and not in the usual way a kid might worry about their first adult responsibility. He could never be sure the papers had actually been delivered.

“After Arnie had finished a block, he had to go back to be sure that there was a paper on each and every doorstop,” Judith L. Rapoport wrote in The Boy Who Couldn’t Stop Washing, her 1989 bestseller about treating people with obsessive compulsive disorder, or OCD. “As soon as he had checked it, and turned to face the new work, the feeling came over him: ‘I had better make sure.’” Around and around he’d go, unable to break the cycle.

Arnie’s case was one of dozens of stories that Rapoport, a child psychiatrist, recounted in her book, one of the first accessible accounts of the disorder written from a doctor’s perspective. As Arnie grew older, his preoccupations began to morph. He never felt as though he could shower or dress “right.” His days were disrupted by violent thoughts about hurting his family members. In his 20s, he got a job in a shoe store but felt compelled, when sorting shoes by size and style, to never repeat any action six or 13 times. On some level, Arnie probably knew the papers had been delivered successfully, that he wasn’t going to kill his family, and that the storeroom was sufficiently ordered. But, on another level, Rapoport wrote, he just couldn’t be sure.

For most of the 20th century, OCD — defined by obsessive thoughts, compulsive rituals, or a combination of the two — was considered a rare and incurable illness. But starting in the 1980s, researchers like Rapoport began to find that the “doubting disease,” as some patients called it, was much more common and more responsive to treatment than previously imagined. Today, studies indicate about 2.3 percent of American adults have had or currently have OCD. For many, the disorder can severely affect quality of life: About half of those with OCD experience serious impairment as obsessions and compulsions take time away from work, relationships, and even more basic functions like dressing and eating.

Rapoport’s book ended on an optimistic note; at the time, new treatments were emerging and she believed that her book would bring sustained scientific attention to OCD. (Attempts to reach her for this story went unanswered.) Now 88, she still publishes new research, but more than 30 years after The Boy Who Couldn’t Stop Washing and even as the scientific approach to OCD has evolved, many of the disorder’s unknowns endure.

OCD research has been hampered by a lack of funding that has left many aspects of the disorder — from its origins in the mind and brain to its genetic and environmental underpinnings — insufficiently investigated, says Helen Blair Simpson, professor of psychiatry at Columbia University Medical Center and director of its Center for Obsessive-Compulsive and Related Disorders. How to allocate such scarce resources has become a “matter of life and death,” she adds, because untreated OCD can have cascading consequences for mental health.

Public misconceptions about OCD don’t help, either. In film and TV representations of the disorder, screenwriters have found it easier to emphasize certain OCD rituals such as hand-washing or arranging, instead of the thoughts behind them. (Think Adrian Monk, the titular TV detective who can’t help but feng shui crime scenes.)

“It’s been minimized,” says Christopher Trondsen, a California-based therapist specializing in OCD who also has the disorder. “I’m so OCD” (or in Khloe Kardashian’s case, “Khloe-CD”) has become a glib way of complimenting yourself for being organized, clean, and on time. The case of Gabby Petito, the 22-year-old Instagrammer found dead this summer in a case that attracted national attention, also spotlighted how little the public knows about the disorder: When she and her boyfriend were pulled over by police before her death, she told them they were fighting because of her OCD; the cops suggested that she was perhaps not the victim, but the perpetrator.

The cumulative consequences of this ignorance can be dire. About half of people with OCD will experience suicidal ideation, Trondsen says, and as many as 15 percent have attempted suicide. Even for those who have access to health care, getting the right help can feel very difficult. Doctors, nurses, and even therapists can get through advanced training without ever learning much about OCD, Trondsen said. As a result, misdiagnosis continues to form a significant barrier to care.

The typical time between a patient’s first symptoms and an accurate diagnosis of OCD is about 15 years, according to the International OCD Foundation. That’s about how long it took me.

On its surface, OCD is one of the more self-explanatory entries in the manual of psychiatry. It starts with a thought so distressing that it triggers compulsive behavior, which can in turn provide fleeting relief. In reality, obsessions and compulsions can manifest in a dizzying array of combinations, each unique to the person suffering. “There’s so many nuances, and so many idiosyncrasies, in OCD,” says Monica Wu, a clinical psychologist and researcher who specializes in childhood OCD.

Even in one person, the distress can slowly shape-shift — like mine. When a new intrusive thought appears, Wu says, many people need to be reminded that it’s the “same thing, it’s just wearing different clothes.” The diversity is what has intrigued researchers, but it’s also part of what makes OCD so difficult to understand.

For some people, OCD may center on intrusive thoughts, which are unwanted and unexpected ideas, images, and urges. They burst like a firework across the mind’s sky, but instead of letting them fade to black, people with OCD fixate on the thought, and attempt to regain control with compulsive behaviors like washing, counting, checking, and other rituals. “That leads to a feedback loop that becomes increasingly urgent and stressful,” says psychiatrist Christopher Pittenger, director of the Yale OCD Research Clinic, “and that can happen with any [stimuli].”

OCD may also incorporate an element of magical thinking. Many people with the disorder describe being driven by a kind of personal — instead of religious or cultural — superstition. If they read a “bad” word in a book, like death, they must go back until they see a “good” word, like life. They need to step in or out of every doorway in the “right” way, and will go back through it a dozen times if they get it wrong. If they can’t perfect these rituals, they may feel they will be directly responsible for something totally implausible and utterly terrifying, like that “a soldier will die in Afghanistan,” Pittenger told me. “That’s a real fear of one of my patients.”

Researchers have developed numerous frameworks to help explain the underlying source of this distress. Some think that OCD is a matter of inflated responsibility: people with the disorder, this theory posits, think that the things they do — and the things they don’t do — could have deadly consequences for themselves or others.

Or, others argue, it may be a matter of thought-action fusion, a cognitive error that can exist across anxiety disorders, in which people feel that thinking about something is equivalent to doing it. Some propose sensory intolerance, which posits that some people with OCD simply can’t screen out things other people barely register. None of these models are perfect, researchers told me, and OCD is probably a kaleidoscopic combination of these and other factors. But they may get us closer to understanding what’s happening in the mind.

Of course, people can and do have intrusive thoughts, irrational fears, and personality quirks and not have OCD. But when someone is struggling with a mental illness, these thoughts can quickly spiral out of control, becoming self-critical, ruminative, or obsessive. Ultimately, what matters is whether these thoughts interfere with the life you want to live. In the most severe cases, obsessive-compulsive behaviors can dominate many or all of a person’s waking hours.

Looking back, my parents think the first signs of my emerging OCD appeared in kindergarten. A few weeks after the September 11, 2001, attacks, while traveling back from a wedding, I begged TSA agents to check me to see if I was a terrorist. By 10, I spent hours a day monitoring the beating of my heart, wondering if it might explode. Every time I went to the bathroom, I would wash my hands and promise myself that if I could snap my fingers under the running water, I’d live until the next time I went to the bathroom — my first ritual.

As I got older, my sense that I somehow posed a danger to others or myself, and that I wouldn’t know before it was too late, began to mutate. In middle school, an older man in our parish whom I had never met died by suicide. Our Catholic school teachers told us he was either “out of his mind” or evil enough to willfully destroy God’s creation; the distinction meant the difference between forgiveness and eternal damnation. I was used to the fire and brimstone rhetoric at this point, but the idea that you could be “out of your mind” was new to me. I couldn’t get it out of my head.

I spent most of the next two years consumed by the worry that I, too, might be out of my mind and, in the process, do something terrible. I did everything I could think to prevent it. When I read a scary book (Harry Potter, in particular, frightened me), I placed it outside my room at night and shut the door, to create a barrier between me and the influence of evil characters. After dark, I couldn’t go to the kitchen, even for a glass of water, to keep a safe distance between me and the kitchen knives. If my parents needed to leave the house, even for a short errand, I tried to convince one of them to stay and watch me, to make sure I stayed safe.

Some days were better than others, but the obsessive thoughts would be triggered by the most benign things, like noticing the veins in my wrist, which I knew would bleed if cut. Once the rumination began, it was like a runaway train. Why would I have that thought? I’d wonder. Something must be wrong — I must be evil or insane. But I don’t think I am. Which means I must be out of my mind and not even know it. Or maybe that’s not true, and everyone feels like this when they’re losing their mind. No one would think this way if they were normal and healthy. Around and around I’d go.

At the time, I felt terrifyingly alone; everyone else seemed to be able to focus on math homework and volleyball practice, while I stayed up all night surveilling myself for signs of insanity. I’ve since learned my experience is fairly typical for people with OCD.

In the process of reporting this piece, I’ve come across stories of people who struggle to drive, because they are convinced they have killed someone without realizing it. Comedian Maria Bamford, who has been open about her experiences with OCD, has described the disorder as being unable to go to SeaWorld “because you’re worried if you’re left alone with a baby starfish, you’d try to kiss its poop hole” — a more socially acceptable way of describing the shame of taboo thoughts, a strain of OCD that can involve distressing ideas like pedophilia, incest, and animal abuse.

One subject of Rapoport’s book slept on a park bench for most of law school as a way of managing his uncontrollable urge to clean his apartment. And then there was my father, who for decades lived with untreated OCD, and repeatedly expressed his concern that my sister and I would die of botulism if we ate our grandmother’s home-canned peaches, terrifying all three of us.

Doctors don’t know exactly why some people will get OCD. People are more likely to have OCD if their close relatives do, which suggests some genetic element, says Barbara Van Noppen, a clinical professor of psychiatry at the University of Southern California’s Keck School of Medicine.

The disorder usually shows itself in early adolescence, though it can also appear or worsen during menstrual cycles and pregnancy, or in the wake of extreme stress, which has led some researchers to theorize the disorder is influenced by hormones. It also appears to correspond with distinct brain activity, says Adam C. Frank, a psychiatrist also at USC. For example, studies show that many people with OCD have hyperactivity in a part of the brain involved in habit formation.

While the precise mechanisms of OCD are still poorly understood, certain therapies have offered patients relief from their most severe symptoms. Since the 1990s, a new generation of antidepressants called SSRIs, including Prozac, have helped many people manage their intrusive thoughts. The standard of care for OCD also involves a behavioral intervention called exposure and response prevention, or ERP.

Unlike conventional talk therapy, where people work to find the source of their problems and, in theory, correct them, ERP teaches people to tolerate increasing amounts of distress, by exposing them to their fears and helping them resist their compulsions. “You have to work like a dog,” Simpson says. For as many as 70 percent of people, SSRIs, ERP, or a combination of the two will offer real and lasting change.

Unfortunately, a small percentage of patients won’t respond to these treatments, Simpson says. So researchers are exploring everything from glutamate modulators and stimulants to cannabinoids and psilocybin. In 2018, the FDA approved for OCD an intervention called transcranial magnetic stimulation, which works by sending a magnetic pulse to the brain through the skull to force certain neurons to fire and, in the process, potentially lessen OCD symptoms. In the most severe cases, doctors might also offer deep brain stimulation, which involves surgically implanting electrodes in the brain to continuously modulate dysfunctional circuits. But many people run into obstacles with their insurance providers, which often won’t cover such cutting-edge care.

Many people with OCD, however, never even get to ERP. When people with OCD seek help, primary care doctors often mistake OCD for anxiety, depression, or even ADHD. Patients “don’t say, ‘I have this really uncomfortable intrusive thought,’” Frank says. “They say, I’m feeling depressed. And we go, ‘OK, they’re depressed!’”

When people with OCD end up in emergency rooms, physicians can mistake their overwhelming obsessions with psychosis, hospitalize them, and improperly medicate them. “I’ve seen it all,” Simpson says. “I’ve seen kids who started presenting with OCD in childhood and spend 10 years on an antipsychotic.” To someone with insufficient training, a patient saying, “I’m worried, despite all evidence, that I may have killed someone” sounds a lot like a patient saying, “I have, despite all evidence, killed someone.”

In seventh grade, I finally worked up the courage to tell my mom about my obsessions around suicide. I tried to stress that I didn’t want to die, but I also wasn’t sure that was true. It confused us both. My dad could empathize — he’d had thoughts like mine before — but without a diagnosis of his own, he was limited in his ability to name the problem or take concrete action.

So my mom reached out to a psychologist who, just a few days later, sat with me and listened attentively to my concerns. She concluded nothing was really wrong; I did not, in fact, want to die, she told me, and everything would probably end up just fine. I could come back, if I wanted, for another appointment or two, but there wasn’t much more to say.

For a while, I was elated by this expert’s reassurance, my slightly more grown-up version of the TSA security check. But the feeling dissipated, and I spent the next decade in and out of talk therapy, developing a probably unnecessary level of self-awareness and learning to use terms like “cognitive distortions” properly. I’d feel better for a bit, stop going to therapy, and then find a new obsession to latch onto. I cycled through fears about breast cancer, brain cancer, my parents dying, my partner dying, my partner not really loving me, me not really loving my partner, all the facts in my stories being wrong (including this one), and on and on.

Then, in grad school, I found a therapist with the answer I’d been searching for my whole life. She asked me a few rapid-fire questions and quickly concluded: You have OCD. I was out the door in 15 minutes — 15 years and 15 minutes. But in the afterglow of a proper diagnosis, I never asked what to do next. While things seemed to improve purely on my own ability to label and dismiss some thoughts as “so OCD,” I kept returning to talk therapy when I was in need of a tune-up.

In hindsight, I had fallen into a common trap: Even with an OCD diagnosis, “people will go to talk therapy, which basically ends up making the OCD worse, because they’re getting reassurance each week,” Trondsen says. While it may seem only natural to comfort someone in distress, it can end up enabling OCD, as Van Noppen’s pioneering work on the downsides of family accommodation has shown. The temporary relief of my own “rationalization” in the middle school bathroom, my parent’s attempts to soothe my worries, and the thrill of a therapist’s “expert approval” only set me up for bigger and bigger falls.

This summer, I finally started talking to my family about our shared experiences with OCD (my sister, it turns out, has it, too). While each of us is moving forward at our own pace, in our own way, I sought out an OCD specialist and began the hard work of ERP. Together, my therapist and I have made a pyramid of all my fears from least to most excruciating. Every week, I tackle a new one, slowly working my way up to the top. I don’t get to avoid my fears, or think them through from every angle, or force anyone else to reassure me that everything is okay.

I still have so many questions about the human mind — about why some of us have endless doubts and others don’t — but now, when I think deeply about these enduring mysteries, I feel like I’m really getting somewhere. I’m no longer stuck going around and around.

Crisis Text Line is a texting service for emotional crisis support. To speak with a trained listener, text HELLO to 741741. It is free, available 24/7, and confidential.

Eleanor Cummins is a science journalist and frequent contributor to The Highlight. She has written about the desire for normalcy amid Covid-19, Trump’s parasocial connection to his constituency, and more.

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