Long before the pandemic arrived, Renée battled intense fears of getting sick from daily life. She worried she could get HIV from doorknobs or suffer brain damage from odorless carbon monoxide leaking from a faulty furnace. Danger lurked everywhere. How could she be sure her plates and mugs were safe to use, even if they’d just come out of the dishwasher? What if, through casual contact, she somehow picked up the herpes virus? Who knew what potential germs might linger on cupboard knobs?
As an adolescent, she soothed her anxieties with elaborate rituals that she believed kept her safe. She inspected items she encountered in public for specks of blood. At home, she made frequent trips to the sink, where she scrubbed her hands like a surgeon preparing for the operating room. She hugged only her very closest friends. And she did everything she could to dodge shaking hands.
Over time and with treatment for her severe form of obsessive-compulsive disorder, Renée, now 36, reached an imperfect equilibrium. She had gotten to the point where she was able to eat lunch with her colleagues in the break room of the Philadelphia school where she teaches technology. She was enjoying working with her students.
Then last winter, as news of the coronavirus bubbled up in China, South Korea, Italy, Spain, and not long after, the United States, Renée found her years of therapy upended.
The virus, Renée told STAT, “gave me a new anchor for all of my fears.” (Like others with OCD in this story, she did not want her full name used to protect her privacy.)
The pandemic has made the majority of Americans feel more anxious, but for Renée and millions of people like her, the virus is the encapsulation of every fear they had ever experienced. Invisible. Seemingly on every surface. No treatment. Potentially fatal, with long-term effects that could last months or years. Before Covid, patients would work for months in therapy to overcome the discomfort of entering a public restroom or boarding a grimy train. Now, every single aspect of ordinary life, from a visit to a grocery store to the arrival of a package, posed the same threat as the bus terminal’s toilets.
For many people with OCD related to a fear of germs and other contaminants, the pandemic justified their irrational fears and excessive precautions. “Reality matched the fears of many of my OCD patients, and they felt normal for the first time,” said psychologist David Yusko, who co-founded the Center for Anxiety and Behavior Therapy in suburban Philadelphia and has treated Renée. “Suddenly, they saw the whole world putting on masks and gloves to be able to go into a supermarket.”
At the same time, though, the pandemic led many patients to regress. Lisa, a 45-year-old therapist who works with children who have learning delays, has emetophobia, or a fear of vomiting. Through treatment with Yusko, she had been able to reduce the avoidance and hand-washing rituals she practiced to prevent the stomach viruses she feared would make her or her family members throw up. But since March, she has found herself right back at her sink many times a day.
“Even David told me, ‘There’s no way I can’t tell you not to keep washing your hands,’” Lisa said.
Frank, another patient of Yusko’s, felt many of the coping skills he’d learned in therapy drain away. “The world is messaging that we need to be more strictly careful, and it’s reinforcing that the messaging I get from my OCD is accurate,” Frank said. “Let me tell you, it has corrupted my thought processes.”
An estimated 1.2% of Americans have OCD, and another 2.3% have experienced the disorder in their lifetimes. Fear of germs is one of the more common manifestations, but by no means the only one. As they did for Renée, symptoms typically begin in adolescence. But they can start at any time.
While the causes and mechanisms of OCD are poorly understood, it appears to have a genetic component, said Steve Tsao, the other co-founder of the Center for Anxiety and Behavior Therapy.
The instinct that we should be wary of, say, hot stoves, sharp knives, or large tigers was deeply rooted in the human brain as we evolved. Many fears are logical, and rituals such as wearing seat belts every time we get in a car, or checking twice to make sure we have situated our hand properly on a circular saw, are protective.
But among people who have OCD, the brain can misfire, and obsessive thoughts twist these rational behaviors into endless loops. “It’s like a wheel that spins too quickly, and doesn’t have a way to stop,” Tsao said.
First-line treatments include a host of SSRIs, but they must often be prescribed at higher doses, and take longer to work, than when they are prescribed for depression. And they can create wrenching side effects.
“In general, the mental health medicines we have are awful,” Yusko said. “They can help you, but they put your body through the wringer, and you often need more than one to get the effect you want.”
Roughly half of those with OCD are seriously impaired by it, and for them, a combination of drugs and behavior therapy, including a treatment called exposure and response prevention therapy, or EX/RP, has been shown to be most helpful. In EX/RP, therapists expose patients to a hierarchy of the thoughts, images, and situations that trigger their obsessions in the first place, starting with fears that evoke less anxiety, and progressing to more distressing ones. With repetition, patients are trained to use their conscious brain to suppress their compulsive rituals.
But in the midst of the pandemic, in-person exposure therapy has become all but impossible. Research suggests that exposure therapy can be conducted via video calls. But Yusko — and many of his patients — have found long-distance treatment to be of limited value. “It’s just not the same to be on a video call and stick my hand in my own garbage can, and watch my patients do it in theirs,” he said.
Over the spring and summer, Renée retreated into her fears, and the rituals she relied on to reassure herself. When she heard the early news reports that said the virus could remain active on surfaces for days, the skills she had learned in exposure therapy often deserted her. Only rarely did she venture out of her apartment. She had her groceries delivered, and left instructions for drivers to put them in the trunk of her car, where she would leave them for several days before bringing them indoors. When she finally did, she would peel off her clothes and then step into a long, hot shower.
“The obsessions just kept feeding themselves, and so did the rituals that sustained them,” she said
For more than six months, she did not eat any fresh food — no fruit, no vegetables, no milk. She sustained herself on packaged food and protein shakes.
Sometimes, it took her an hour just to make oatmeal. “You open the box and have to wash your hands,” she said. “You throw the wrapper in the garbage, and have to wash your hands again. You take the bowl out of the cupboard, but that needs washing, so you wash that, and then wash your hands again. It was exhausting,” Renée said. “I was just in survival mode trying to keep my head above water. The obsessions about Covid were taking up more and more space.”
Frank, 35, also found himself challenged. Before the pandemic, he was managing his symptoms with a combination of antidepressants and EX/RP therapy.
He had struggled with a persistent form of OCD for decades. His fears are wide-ranging and pervasive, and include contracting Down syndrome, a genetic disorder, from being near someone who has it, and doing something that might provoke an attack by supernatural beings.
“I had made some progress,” he said. EX/RP had helped him face, and come closer to tolerating, many of his anxieties about contamination. The thought of touching currency, for example, revolted him.
As part of therapy, Yusko presented him with some worn, dirty bills. “We’re talking small, unmarked ones and fives a criminal would want — all taped up, that looked like they’d been up somebody’s nose to snort cocaine at some point,” Frank said.
The most dramatic part of the exercise was to put the money in his mouth, but Frank stopped short of that. “The closest I could come was to touch it and then touch my face,” he said. “That’s as high as I could go with that one.”
But since the pandemic started, his fears have roared back. He can’t do EX/RP in person, and he white-knuckles long days of looking for work and caring for his toddler daughter.
“I’m in deep circles of hell basically all the time,” he said. “When the rest of the world is acting like me, that’s a big problem.”
Renée can empathize, and yet, she has found a way to cope. This autumn, the school where she teaches moved to a mix of video and in-person classes, and she drew on what she describes as a “muscle” she has exercised through EX/RP, to return to the building. She recalls previous therapy sessions, including one in which she went to a coffee shop and was able to drink from the plastic lid of the paper cup the barista had snapped on with his bare hands. She remembers overcoming the anxiety she felt when she offered jellybeans to strangers from a plastic bag — and then reached in after them for her own handful. Another time, she ordered a fish sandwich from a food truck.
“It was terrifying, but delicious,” she said.
Eventually, Renée emerged from the isolation in which she was sequestered last summer, and is taking more risks. She rents a room from a family with whom she shares a kitchen, and has begun eating apples and premade salads. While it still gives her pause to eat or drink near them, she recently overcame her fears enough to prepare a mug of hot chocolate in front of one of the family’s sons.
She has even begun to date strangers. She has been open with a man she met online about her contamination fears, especially of sexually transmitted infections. Before they met, she asked questions about his exposure to Covid, and requested that he get tested for a battery of STIs. Once he received negative test results, the two met at his house. Renée asked to examine his hands for minute cuts, which didn’t seem to bother him. Since they were both wearing long sleeves, she was able to cuddle next to him on the couch. It wasn’t easy for her, and they didn’t kiss. “But I relaxed, and let myself not worry about herpes,” she said.
“OCD interferes with being happy,” Renée said. “It’s a constant battle to tell yourself, ‘This is OCD,’ and as David would say, ‘OCD is a liar.’”
“But that’s what it takes to move toward your own happiness, and human creature comforts, like food that needs to be refrigerated.”
She paused. “Or touch. Accessing them both involves risks, and discomfort. But the trade-off is, without them I am less happy.”