A teen of color, overwhelmed by fears of contamination, closed themselves in their bedroom at the start of the COVID-19 crisis. As time went on, they became increasingly depressed and disconnected from the world, alarming family members.

Another adolescent of color attended therapy on their parent’s phone but was not able to look into the camera; they were too afraid to touch the phone.

Both of these young people live in New York City and suffer from Obsessive Compulsive Disorder (OCD), in which a person experiences obsessions, which are intrusive and unwanted thoughts that cause distress, and/or urges to perform compulsions, which are behaviors or thoughts a person uses to avoid or reduce anxiety or get rid of an obsession. While in the U.S., the acronym OCD is often used as a synonym for characteristics like “detail-oriented” or “organized,” experts say the actual disorder is highly distressing and sometimes debilitating.

For several reasons, the pandemic has been particularly challenging for OCD patients. Scientists and news reports have found that many sufferers of OCD—both children and adults—experienced exacerbated symptoms. Clinicians who spoke with City Limits mentioned isolation, stress, or a lack of access to normal coping mechanisms as factors that could have contributed to this worsening. In addition, while OCD can appear in many forms, fear of contamination and germs is a common type, and some sufferers have struggled with excessive worry about COVID-19 contamination and spreading the illness. These, in turn, can manifest in a rise in compulsions, such as excessive cleaning. Some people have also experienced other types of OCD exacerbated by the pandemic, such as somatic obsessions or health OCD (concern with fearing something is wrong with the body) and harm OCD (fear one will be responsible for something terrible happening).

“I don’t know that the diagnostic incidents of OCD has gone up, but the symptom occurrence and the severity has exacerbated with the pandemic,” says Teresa Hsu-Walklet, a psychologist and the assistant director of the Pediatric Behavioral Health Integration Program at Montefiore Medical Center in the Bronx. She adds that the pandemic has led to new complexities for therapists providing treatment.

“Pre-pandemic, we might ask youth to stop washing hands as part of treatment…but due to COVID19, we want our patients to be safe and don’t want them to stop washing their hands completely,” she wrote in an email. “Moreover, the media, parents, and schools are now reinforcing the idea of washing hands, which makes treatment harder when the severity of compulsions is greater.” While in the past, a psychologist might ask a youth to touch a public doorknob and not wash their hands, now they might aim to limit the number of times a young person washes their hands once they are already in their home, she explains.

Dr. Rebecca Berry, a licensed psychologist who coordinates the intensive OCD treatment at the  Child Study Center, part of Hassenfeld Children’s Hospital at NYU Langone, says she didn’t see worsened contamination symptoms at the very start of the pandemic, but as the pandemic progressed and children were left isolated and without access to pleasurable activities, many patients’ OCD worsened, with some experiencing contamination fears but others experiencing different obsessions and compulsions. Many also became more depressed.

“For some youth, it was sort of like, which is [it], the chicken or the egg? Did the OCD contribute to a worsening depression during the pandemic, or did depression intensify the OCD?” says Berry. “I don’t think we can necessarily answer that.”

Experts say genes likely play a role in the development of the disorder, but that it can be triggered and exacerbated by stress. OCD often begins either between the ages of 8 and 12 or in late adolescence to early adulthood. At any given time there are roughly one in 100 adults and at least one in every 200 children living with OCD in the United States. To put the latter in context, this is less than the rate of children who experience anxiety (seven in every 100) and depression (three in every 100) but comparable to the rate of children who suffer from diabetes.

Much has already been written on the mental health crisis facing New York City’s youth—particularly its Black and brown children, who lost parents during the pandemic at twice the rate of white children, and who, prior to the pandemic, were twice as likely to live below the poverty line.

Yet there’s little public information available on how OCD impacts the city’s young residents. The New York City Health Department Epiquery database reports that 3 percent of parents with a child between the ages of 2 and 12 answered yes when asked if a health professional had ever said their child had “anxiety problems,” but the database doesn’t offer data about OCD specifically.

At the same time, for low-income youth and youth of color, there are compounded barriers to receiving treatment for this disorder.