NYC Youth Struggling with OCD Face Compounded Challenges in Pandemic

‘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.

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.

When OCD meets racism

Experts acknowledge that the typical media representation of an OCD sufferer isn’t a non-white child.

“A pretty common public perception is that the OCD sufferer is a white male who has a certain level of exactness in their behavior and whose diagnosis is probably more appropriate to call OCPD [Obsessive Compulsive Personality Disorder, a different illness],” says Dr. Dean McKay, a professor of psychology at Fordham University who runs the Compulsive, Obsessive, and Anxiety Program (C.O.A.P.).

Before 2008, there were few published studies focused on the presentation or treatment of OCD in African Americans and a low rate of participation in OCD studies by non-white Americans, writes psychologist Monnica Williams, a professor at the University of Ottawa and an expert researcher in OCD among Black Americans. She says that to her knowledge, there are still no studies truly focused on African American children with OCD, and that it’s difficult for researchers to obtain funding for studies of depression and anxiety-related disorders in the Black community.

“Black people specifically are often stereotyped as being strong and sturdy and impervious to pain,” says Williams, who adds this stereotype has its roots in rationalizations of slavery.”That stereotype also extends to emotional pain,” she says, adding that research funders “aren’t looking for problems like depression and anxiety, because of the stereotypes of what the problems actually are.”

But it’s not just funders: overwhelmed mental health clinics in disenfranchised communities struggling with violence sometimes treat people who suffer from anxiety or depression as a low priority for care, according to Williams.

While Black American adults and white Americans have a similar chance of getting OCD in their lifetimes, Black Americans are more likely to have a more severe case and stay ill longer, Williams says. (One study found similar severity rates among all populations, but that minority populations were less likely to get treatments.)

People of color with OCD are also often misdiagnosed with other illnesses, including schizophrenia and psychosis—disparities in care that help fuel distrust in the mental health care system, experts say. “I think there’s a certain measure of awareness in some communities of color and low income communities [of this]. Not only is there a stigma around mental illness, but also there’s a hazard that they could be given a course of treatment that is inappropriate or may even be harmful,” says McKay.

Of course, for any person regardless of race, OCD is not always easy to diagnose. Sufferers’ obsessions and compulsions can be quite heterogeneous, and some are easier to identify than others.

“The compulsions associated with OCD can manifest in different ways. Whereas some compulsions are easily observable (e.g., excessive hand washing, tapping a certain number of times), internal compulsions are more difficult to detect. For example, a child or teen may repeat a reassuring statement or count to a specific number internally,” wrote Dr. Michelle Fenesy, a postdoctoral fellow at the Washington Heights Youth Anxiety Center, in an email.

OCD sufferers may also try to hide their OCD symptoms. “In regards to OCD specifically, children and teens may experience shame related to some obsessions (e.g., harming others) and therefore not disclose having these intrusive thoughts,” Fenesy continued. In one form of OCD, a sufferer may have intrusive sexual or violent thoughts along with a fear of acting impulsively, even though the sufferer has no desire to act upon the thoughts.

Some argue for greater cultural awareness to the range of racially and culturally specific manifestations of OCD symptoms. McKay worked with one child who feared a classmate’s touch would turn the child into a zombie. Though this might have seemed strange to many practitioners, the child was of Haitian descent, and this was simply an obsession focused on the zombie of Haitian cultural mythology.

Williams also says therapists need a better understanding of the impact of racism on their clients. Her study found that both material hardship (the degree to which an individual cannot meet basic expenses) and exposure to racial discrimination were positively correlated with the exacerbation of OCD symptoms. She also writes that, “OCD symptoms may be influenced by negative racial stereotypes.” Take, for instance, the false and racist stereotypes about Black Americans being unclean and violent. These stereotypes might cause some Black people predisposed for OCD to worry excessively about presenting as clean, or about having intrusive violent thoughts. Concern over such stereotypes might also cause Black patients with OCD to not share and get treatment, for fear of being seen as unclean or violent by others. Therapists need to invest extra time into ensuring their clients of color understand their obsessions and compulsions are quite normal for OCD, Williams says, and they also have to take seriously the stress their clients face from living in a racist society.

“Experiences of racialization may be embedded into the client’s symptoms, but when therapists dismiss or minimize challenging race-based experiences, they can do more harm than good,” wrote Williams in an online editorial.

Stigma and community access

There are multiple other barriers that can prevent a family from seeking treatment.

“Systemic barriers that prevent youth with OCD from accessing treatment are not largely different from barriers that prevent access to mental health treatment for common disorders like anxiety or depression,” wrote Carolina Zerrate, medical director of the Washington Heights Youth Anxiety Center, in an email. “There is still significant stigma about having mental illness and receiving psychological or psychiatric treatment. Students in the public schools we serve in upper Manhattan mostly identify as Latines, black, or mixed race. Stigma is not exclusive though highly prevalent among BIPOC communities.”

Other barriers in marginalized communities can include limited knowledge about mental health disorders and how to get treatment as well as language barriers and cultural beliefs, such as a reliance solely on religious solutions. Furthermore, even if a family has obtained affordable health insurance, other financial hurdles can hinder a family from seeking treatment for their child, such as the cost of subway rides or the price of internet to access telehealth appointments.

Many communities still lack information about OCD. While in 2017 New York State passed a law mandating that mental health issues be incorporated into the curriculum for grades K-12, there is some variability by school in the implementation of the law, and most school curriculums likely don’t go into much depth about OCD specifically, according to John Richter, director of public policy at the Mental Health Association in New York State.

“What would be useful … is if there was some outreach to schools, particularly in some low-income communities and other communities of other under-represented people and communities of color, to disseminate some information about OCD,” says McKay, “and also, in consultation with members of those communities, to develop an understanding of culturally relevant symptoms.”

There can also be varying levels of knowledge about the disorder among health care professionals themselves, including medical practitioners, school counselors and others who interact regularly with children. OCD experts say the more these professionals know about OCD, the better, as they can play a crucial role in helping families overcome stigma and other barriers to care.

In response to a request for comment on how schools are supporting students with OCD, the city’s Department of Education emphasized that every student currently has access to either a social worker, a guidance counselor or a mental health clinic, and that the DOE has additional partnerships with Health + Hospitals to provide clinical mental health care.

“Through deep investments in services and resources, we’ve put mental health at the core of our work with young people,” said Nathaniel Styer, a DOE spokesperson, in an email. “They are trained to work with children to identify issues like OCD, and to develop a plan that identifies appropriate next steps and supports, like supplementary aids or tailored in-school supports.”

The number of social workers in the city’s public schools has increased over the past decade, and in December the de Blasio administration announced it would hire an additional 150 new social workers and expand the community school program in the 27 neighborhoods hit hardest by the pandemic. Still, teachers say far more school mental health professionals are needed.

Asked to comment on how the city was working to address barriers to treatment for OCD, the Health Department referred City Limits to its Community Supports and Services web page, which lists hotlines, resource centers, and programs for families and children pertaining to multiple mental health conditions.

Affording the best treatment

Even though New York City is known as a home for many of the nation’s preeminent mental health specialists, it can be difficult to find practitioners who can properly treat OCD. Many therapists are focused on psychodynamic therapy, which emphasizes gaining insight about oneself through a longer-term process of discovering an underlying emotional narrative. For OCD patients, however, another form of treatment is widely thought to be more effective: Cognitive Behavioral Therapy, which aims to immediately identify negative thinking patterns and create new thinking skills to change feelings and behaviors.

The type of cognitive therapy considered the most important for treating OCD is Exposure and Response Prevention (ERP) therapy, which requires patients to purposefully expose themselves to things that make them anxious. According to McKay, not enough therapists undertake the intensive training needed to become a practitioner of ERP, and some psychodynamic therapists are uncomfortable with the idea of pushing clients to be uncomfortable. “[ERP] has a lingering public relations problem,” he says. “Fortunately, that seems to be changing.”

To add to the problem, many ERP specialists do not accept health insurance. “I think the challenge in the therapy world is the reimbursement rates to take insurance are just abysmal. It’s really difficult for a practitioner to make it [if they take insurance],” says Dr. Eric Storch, a psychologist who oversees the Cognitive Behavioral Therapy for OCD and related disorders program at Baylor College of Medicine in Texas.

City Limits used the Psychology Today website to search for therapists within 30 miles of central Manhattan who treat OCD and use ERP, retrieving 185 results. Filtering those searches to psychologists who take Medicaid reduced those results to three, plus a telehealth therapist in Rochester. Filtering instead to psychologists who take Healthfirst, a no-to-low-cost health insurance and a Medicaid managed care organization, reduced results to five psychologists.

City Limits also called the NYC Well hotline developed under the city’s ThriveNYC initiative to see if the city could provide referrals to ERP specialists who accept health insurance, but the hotline database is unable to filter according to treatment method, leaving callers to comb through lists of clinics that offer treatment for OCD to see if any offer ERP.

“This is a training problem, and we need to be able to disseminate the treatment more widely because it does require a level of expertise that’s not usually present in Medicaid or Medicare-based settings,” says McKay.

There’s reason to have hope; Williams, who is the co-founder of the diversity council for the International OCD Foundation (IOCDF), says the organization has begun offering scholarships to clinicians of color to participate in trainings, and she’s working on an initiative to bring trainings lead by OCD specialists of color to more communities of color.

There are also certain places that do accept patients with insurance and Medicaid. For instance, Hsu-Walker at Montefiore works in a primary care setting, so patients can walk down the hall to get mental health treatment, with Montefiore itself eating the insurance cost difference. In addition, some university externs will see patients for a reduced fee.

Health insurance companies are actually required under New York law to provide treatment for patients with OCD, so patients can try petitioning their insurance company to cover a specialist who is out-of-network, says McKay, though he notes some companies are more amenable than others. Williams finds insurance companies are often not willing to reimburse for two 90-minute sessions per week—the golden standard treatment for OCD. “There needs to be a lot more priority given to what the clinician says…rather than barriers and roadblocks to actually getting that treatment,” she says.

One silver lining of the pandemic for OCD patients is increased access to telehealth medicine in New York State, which has allowed OCD patients to seek specialists beyond the city’s limits. ERP is also often more effective when done in the space of the home.

“Telehealth practice has allowed for exposure to be done in ways that are more relevant to the individual,” says McKay. “You can walk around the house! You can be on a secure network via telehealth-based intervention and the [therapist] can guide you right there in real time.”

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Are you or someone you know seeking treatment for OCD? Here are some suggestions for New Yorkers seeking help.

• Use the Psychology Today search engine to find a therapist, specifying your health insurance, disorder, age range, and the specific treatment you are seeking.
• Use the IOCDF database to find a therapist or practice. You can’t search by your specific insurance, but you can narrow by those who take private insurance, Medicare or Medicaid, a sliding fee, etc, and you can search by specialty, age, and other criteria.
• Some hospitals are also affiliated with OCD clinics or specialists who accept some, or many, insurance types.
• You might also find universities that are conducting studies that offer treatment for free.
• Check out New York specialty practices that say they don’t accept insurance or only as an out of network provider, but do provide a sliding scale of fees, especially if you’re working with an extern, masters or doctorate student.

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City Limits’ series on behavioral health and NYC’s children is supported by the Citizens’ Committee for Children of New York. City Limits is solely responsible for the content and editorial direction.