Rosalyn (not her real name) had no idea what she intended to do with the three boxes of spaghetti she had just dumped into her shopping cart. She didn’t want them—she certainly didn’t need them—but never mind, she had to buy them. And the spaghetti boxes weren’t the only unwanted items she picked up in the grocery store that day during the first year of the COVID-19 pandemic. If she so much as grazed one item while she was reaching for another, into the shopping cart it went.
“Everything my hand touched I had to buy,” she said. “I didn’t feel I had a choice. There was too great a chance that I had somehow contaminated the item, and then it would hurt another unsuspecting customer who bought it.” So she left the store with a bulging load of shopping bags—and a lot of guilt, too. “Once I had bought so much, I worried there wouldn’t be enough food left for other people.”
Rosalyn is one of the 2.3% of American adults diagnosed with obsessive-compulsive disorder, or OCD, according to the National Institute of Mental Health. OCD is caused principally by excessive activity in the amygdala, a walnut-sized structure at the base of the brain that processes fear, danger and the fight-or-flight response. The disorder can manifest as compulsive, repetitive behaviors; an anxiety about getting ill or spreading germs; or an excessive sense of responsibility, and an intense fear of causing risk to others, as in Rosalyn’s case. Even people without an official diagnosis are affected; about 25% of Americans will exhibit at least some obsessive-compulsive behavior at some point in their lives, according to a 2008 study published in the journal Nature.
The pandemic has made life much worse for people with OCD symptoms. New research shows that OCD symptoms have gotten more severe for many people during the pandemic, and new diagnoses have increased. More and more people are turning up in doctors’ offices with new cases of the condition. “Studies have consistently shown that people without OCD have scored higher on our OCD assessments than they did before the pandemic,” says Andrew Guzick, a clinical psychologist at the Baylor College of Medicine. “They are exhibiting more OCD-like behaviors and reporting more intrusive fears characteristic of OCD.”
It’s no wonder: A global pandemic is a perfect breeding ground for anxiety. OCD is a disorder of doubt. Was that door knob contaminated? Did I leave the stove on? Did I hear the doctor correctly when she told me that that freckle on my arm is really just a freckle? Refract this kind of pre-existing uncertainty through the lens of a pandemic that to date has infected more than 327 million people worldwide, killed 5.5 million and can strike anyone, and people who are already clinically anxious are going to experience even more anxiety.
“OCD thrives on intolerance of uncertainty and a perceived need to prevent harm, especially as it relates to contamination, so it is no surprise that it has been a difficult time for people struggling with the disorder,” says Guzick. His meta-analysis, published in October 2021 in Current Psychology Reports, found that 32% of people with OCD experienced a worsening of symptoms during the pandemic.
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OCD is a contextual condition, growing worse in times of personal or environmental stress and easing back when circumstances grow calmer. Since COVID-19 first emerged, a flurry of research in addition to Guzick’s has been conducted looking at the exacerbation of symptoms in people with the condition, and the findings have been troubling. A September 2020 study in the International Journal of Environmental Research and Public Health, for example, surveyed more than 6,000 people with OCD and found that 60% reported a worsening of existing OCD symptoms or an onset of new ones from the earliest days of the pandemic in late 2019 through the end of March 2020. A November 2021 meta-analysis of 21 studies published in Neuroscience & Behavioral Reviews found that up to 65% of respondents reported a worsening of their OCD during the pandemic. Yet another 2020 study, published in BMC Psychiatry in October, focused on young people ages 7-21 and found that nearly 45% experienced a worsening of overall OCD symptoms within the first pandemic year.
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For people suffering with OCD involving contamination, the pandemic has been something of a validation—a “told-you-so” to all of the people who had scolded them that their compulsive need to wash their hands and socially distance before the pandemic was excessive and unhealthy. “Welcome to my world!” memes have popped up all over the internet from OCD sufferers as the population at large began to adopt exactly the same precautionary habits they had long practiced. But that kind of satisfaction is short-lived—and comes with a long-term price.
“There are some folks who are saying, ‘I’m actually having an amelioration of symptoms, or I feel validated in my concerns,’” says Michael Wheaton, assistant professor of psychology at Barnard College, and the lead author of a June 2021 study in the Journal of Anxiety Disorders showing that 72% of people with OCD had worse symptoms since the onset of the pandemic.
The problem is, people without OCD respond to pandemic-era guidelines very differently than people with the disorder. Washing your hands once for 20 seconds after entering the house may have become common practice for most people in the age of COVID-19; washing your hands multiple times for 20 minutes at a time is too often the response of people with OCD. It’s that kind of overreaction that clinicians are worried is becoming too prevalent.
“For somebody with contamination issues, we would talk to them about hand washing upon entry of the home, but no other hand washing once you’re in the confines of your home. We tell them we’re going to operate by CDC [the U.S. Centers for Disease Control and Prevention], not OCD,” says clinical psychologist Anthony Pinto, program director of the Northwell Health OCD Center on the campus of Long Island Jewish Medical Center. Pinto also suggests that those with OCD “practice touching [potentially contaminated] objects in the home after washing.” Re-exposing patients to perceived dangers like picking up mail or unwashed groceries and then resisting the urge to decontaminate—a treatment approach known as exposure and response prevention (ERP)—was a pillar of all OCD treatment long before the pandemic.
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The problem with ERP in the era of the pandemic is that, at least at first, it was unclear if the exposure part of the process was actually dangerous or not. In the early days of COVID-19, we opened doors with our elbows, pushed shopping carts with our sleeves pulled down over our hands, bumped elbows in greeting and stayed at least six feet apart. Even now—especially with the rise of Omicron—no psychologist treating an OCD patient would recommend wading unmasked and untested into crowds of people whose viral status is unknown, just to toughen a patient’s psyche against the anxiety caused by OCD.
What’s more, ERP is traditionally meant to be practiced in the supportive presence of a clinician—a context that isn’t necessarily comfortable or even available for many during the pandemic. But ERP practitioners have adapted; telehealth sessions via Zoom and other platforms have exploded over the past two years, and plenty of exercises can be done virtually and just as supportively on-screen as in person. If a patient is afraid to sit on their bed after being outside, for example, “we can work with that patient online to go outside and then come back in and sit on their bed, then lay on the bed with their street clothes on,” says Pinto. “This is really geared towards experiential learning—having the patient ride through that uncomfortable experience.”
Things get trickier for people with the responsibility form of OCD—the fear not of putting themselves in danger, but of harming others—like Charles. Before home tests became available, every sniffle Charles (not his real name) heard from his three-year-old son was an alarm signal to rush the boy to the doctor for yet another COVID-19 test involving an uncomfortable deep-nose probe. Charles argued for the tests, but his wife resisted. When the boy didn’t get tested, Charles suffered inwardly.
“I, predictably, imagine doomsday scenarios whereby we wipe out his entire nursery school because we were cavalier about minor cold symptoms,” he says.
Stress exacerbates OCD in whatever form it takes, and the greater anxiety becomes, the more people seek a perverse kind of comfort in their rituals. “We see in students who have OCD, when it comes time for final exam period, they’re stressed and sometimes OCD symptoms get worse,” says Wheaton. “They have developed this habitual response that when I’m anxious and stressed out, I turn to compulsions, because it’s sort of a learned behavior to give me a sense of control.”
Ultimately, the pandemic will end, but for many people with OCD, the anxiety and precautions may not. “The driving force in OCD is the amygdala’s distress signal; it’s not driven by new information from society,” says Steven Phillipson, founder and director of the Center for Cognitive-Behavioral Psychotherapy in New York City. Two years of contamination validation could take a long time to undo. Pinto worries that even as the rest of the world at last discards masks and forgets about social distancing, people with OCD will continue to cling to old pandemic habits. “Those individuals were going to have a hard time adapting or trying to return to some normal activity because they want some assurance of 100% safety,” he says. “The only way to have that assurance would be to remain shut down.”
For some people, however, the trial by viral fire has actually been instructive, forcing them to deal with their OCD in ways they hadn’t before. “The COVID era has exacerbated my OCD symptoms, but it’s also been something of an opportunity,” says Charles. “I have a long history with cognitive behavioral therapy, and there has certainly been no shortage of chances to sharpen those skills. The added stress has also led me to seek out a psychiatrist and a prescription for medication, which has been a big help as well.”
“But in the end,” he adds with a rueful laugh, “would I do it all again? Hell no.”
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Write to Jeffrey Kluger at jeffrey.kluger@time.com