How social determinants of health shape the OCD journey

By Taneia Surles, MPH, NOCD

Where we work, play, learn, worship, and live all have a profound effect on our health, often as much as genetics or healthcare. These non-medical factors, known as social determinants of health (SDOH), include everything from income and education to housing stability and access to transportation. The SDOH not only shapes our overall health and well-being but also our ability to access high-quality healthcare.

For people with obsessive-compulsive disorder (OCD), a condition characterized by a cycle of intrusive thoughts and compulsions, the path to effective treatment can be complex. Although OCD is highly treatable, it requires a specialized form of therapy known as exposure and response prevention (ERP) therapy, which can sometimes be difficult to access.

By exploring how the social determinants of health affect the OCD care journey, we can better understand the barriers that stand in the way of healing and what it takes to make treatment more accessible for everyone.

OCD and inequity: The hidden burdens

OCD is a complex mental health condition that requires specialized treatment to reduce symptoms. The most effective therapy—ERP—helps people confront their fears head-on while resisting the urge to engage in compulsions like rumination, checking, or reassurance-seeking.

However, there is a limited number of therapists who offer ERP. Unlike more general forms of talk therapy, ERP demands targeted expertise and a structured approach. And that gap in care becomes a bigger problem when access isn’t equal to begin with.

Very often, people with OCD are overlooked in the mental healthcare system. As a result, many people are misdiagnosed, receive improper therapy, or struggle for years without the tools that could help them recover.

How social determinants impact OCD diagnosis and treatment

Just about every social determinant of health influences a person’s OCD journey, from diagnosis to treatment. These factors compound on the fact that OCD is frequently misunderstood—and even joked about—which can deter people from seeking care.

Below are the ways social and economic factors shape access to OCD treatment:

Socioeconomic status

Socioeconomic status is a way to describe a person based on their education, income, and job. People with a low socioeconomic status tend to face more challenges accessing healthcare resources. “If you have low socioeconomic status, it’s harder for you to access treatment, especially when it’s specialized or something that not a lot of people do,” says Tracie Ibrahim, LMFT, CST, Chief Compliance Officer at NOCD. “A lot of therapists will charge high prices, which then limits access to people who have higher socioeconomic abilities.”

Transportation and internet access

Transportation can be a significant challenge for individuals seeking care, even if they have insurance and a confirmed diagnosis. For those in rural areas, it can be difficult to find an ERP therapist in their area. A lack of reliable transportation or long travel times can often delay or prevent treatment.

Alternatively, if someone seeks virtual therapy, they may encounter issues with technology. “Maybe they seek telehealth therapy, but they don’t have access to the equipment that they need to join a session or don’t have a strong enough internet speed,” Ibrahim says.

Stable housing and privacy

Housing instability can make it almost impossible for many people to prioritize their mental health. With a lack of a consistent, private, and safe space, virtual therapy can be difficult to do.

“When I used to do in-home mental health support for people who had a lot of social determinant barriers, their home environment would have people doing drugs, gang members in the household, or gunshots outside,” Ibrahim says. “Some homes had so many people living in one spot that there was no room for you to do anything.”

Education and mental health literacy

Some people lack access to health education, and so often, this can lead to their OCD symptoms being misunderstood or completely dismissed. Ibrahim says someone may be unaware of how OCD presents or what ERP is, to know how to seek help. Also, people are often told that they’re just “neat freaks” or “worry too much,” while others may be misdiagnosed with generalized anxiety disorder (GAD) or even personality disorders.

Cultural mistrust and stigma

Culture also plays a large role in delayed diagnosis and treatment in OCD. Marginalized communities, such as the Black community, can have a deep mistrust of the healthcare system. They may have worries about being judged, misunderstood, or pathologized by the healthcare providers they’re supposed to trust. When OCD shows up in the form of religious or culturally specific fears, providers without culturally competent training may misinterpret symptoms or dismiss them altogether.

Barriers in the mental healthcare system

Because there’s a limited pool of therapists trained in ERP, some providers claim to treat OCD, but don’t have the proper expertise and may deliver incorrect therapeutic approaches that can be harmful to people with OCD.

People with taboo themes of OCD, like harm or pedophilia, who decide to share their experiences with others, may be punished for doing so. This was the case for Ibrahim when she was a teenager: “I called a crisis mental health teen hotline, and what I discussed with them is what I now know as suicidal OCD. They assumed I was suicidal, so they sent police to my house, who arrested me. They took me to a county hospital where they handcuffed me to a gurney and stuck me in a hall because no beds were available.”

Ibrahim’s experience with undiagnosed OCD is a commonality among many. People have been taken to mental hospitals, had the police called on them, or had Child Protective Services (CPS) visit their home because they were seen as a danger to others, rather than someone needing specialized care.

All thoughts of suicide or self-harm should be taken seriously. If you or someone you know has reported thoughts of self-harm, please call 911 or contact your local emergency room number immediately. In the United States, you may also call the National Suicide Prevention Lifeline at 1-800-273-8255 or text the Crisis Text Line. This line is available to you all day, every day.

How OCD care is becoming more inclusive

While there’s a lot of work to be done in improving OCD care, many strides have been made to make the journey more inclusive and understanding. For starters, many ERP therapists deliver culturally responsive care that respects their clients’ backgrounds. “Culturally appropriate care is care that starts with a blank slate and holds space to find out what a person’s values and beliefs are,” Ibrahim says. “It’s taking the time to learn and understand each person and bringing assumptions or biases into a room where you’re about to assess and provide treatment.”

At the same time, more insurance providers are beginning to cover ERP therapy, thereby expanding access to people who previously had to pay entirely out of pocket or forgo care. NOCD is committed to making virtual ERP more accessible by accepting most insurance plans and providing coverage for 155 million Americans.

Virtual ERP has also made a meaningful difference, particularly for those in rural areas or with limited or no transportation. “Virtual ERP breaks down barriers, and one of my favorite things about it is that it allows us to see what’s really going on in a person’s life,” Ibrahim says. “If your OCD is triggered at home or somewhere else, we can work with you in those spaces. When you come into an office, you’re not bringing those triggers with you, so it’s great that we can assess things this way.”

Living with OCD is challenging to deal with daily. On top of managing symptoms, you also navigate systemic barriers, which can feel overwhelming. But despite these challenges, many people have found ways to advocate for themselves, seek care, and persevere through setbacks. The OCD community serves as a reminder that change is possible and is indeed happening.

If you or someone you know is dealing with OCD, know that effective treatment exists, and access is expanding. The path is not always easy, but with the right support, healing is within reach.