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By: Rebecca Bernstein, MA Folklore

The International OCD Foundation’s (IOCDF) recent landmark white paper reveals more than 80% of OCD cases in America remain undiagnosed (International OCD Foundation, 2025). Considering the size of this clinical challenge, it might seem odd to suggest that a small, humanities-based field like folklore— yes, folklore — has any role to play in the solution. As someone who studies OCD personal narratives (stories people tell about their lived experiences), my research suggests otherwise. In a situation that invokes the feeling of all-hands-on-deck, the tools and perspectives of this field may offer more benefit than we might initially give it credit for.

Folklore is the study of informal, creative communication. Dr. Lynn McNeill describes it as anything people “say, do, make, or believe” (McNeill, 2013). Folklore includes everything you’d think of (quilts, traditional music, fairy tales) and a lot of things you wouldn’t (occupational culture, gossip, internet memes.) We find examples of folklore everywhere. It’s in our holidays and our hobbies, our food and our fads, our jokes and our grieving. Folklorists study the infinite ways people express themselves in daily life. This, in turn, helps us better understand the cultural realities in which they live. And because what we “say, do, make, or believe” describes most of human behavior, the folkloric lens can be an indispensable one with which to investigate the world.

The benefit of studying how people express themselves is obvious when we recognize that in mental health, conversation and narrative are the primary tools we use to give and receive care. OCD isn’t just a diagnosis. It’s also a fundamentally creative experience. (Creative things don’t necessarily have to be beautiful, pleasing, or even wanted. They just have to be new and meaningful.) (Dictionary.com, 2023). Although ego-dystonic, extraordinary beliefs and elaborate rituals are hallmark features of OCD. When sufferers discuss their experiences, they are naturally inclined to do so through their own personal and cultural lenses. Therefore, descriptions of OCD vary infinitely. If the issue is our failure to recognize OCD when it presents itself, an approach designed to make sense of something as messy as human expression may offer insights that quantitative research methods still struggle to obtain.

How Folklorists Research

Just like in biomedical research, the research methods folklorists use matter. Our goal is to better understand people and their communities. That means we strategically build relationships, listen deeply, and intentionally embrace the complexity of those we talk to.

When I started researching OCD narratives, I wanted to know: What were the internal realities like for people who lived with this illness? What made their stories distinct? And how might those stories be connected? One of the biggest challenges I faced in my fieldwork was the potential for my participants to self-censor. As someone who also lives with OCD, I knew all too well the role shame and fear could play in the choice to fully share one’s reality with others. Using both field-tested approaches and my own lived knowledge, I conducted interviews with people with OCD, approaching them in a way I hoped would ease interviewees into difficult conversations:

• I provided anonymity. I held all interviews on Zoom, where participants were free to keep their cameras off. I also assigned each one an alphanumeric signifier (A1, B2, etc.) in my writing.
• I emphasized the importance of story. Although I asked specific questions, I also allowed participants to go off topic and engage in two-way conversation. The story was the point.
• I used the “kitchen table” interview method. Based on the work of Carl Lindahl, this method tries to recreate the intimacy of two individuals talking around a kitchen table. It discourages framing the interviewer as an objective party, recognizes storytellers as experts in their own experiences, and suggests that interviewers only ask questions they themselves would be willing to answer (Lindahl, 2012).
• I disclosed. My choice to openly discuss my own OCD diagnosis with interviewees allowed conversations to proceed with a certain warmth and vulnerability.
• I emphasized participants’ humanity. I treated each participant as a full individual rather than just a source of information. This meant I worked on a model of enthusiastic consent. It also meant I asked them for feedback on my writing to ensure I portrayed their experiences accurately.
• I compensated participants well. Each received a $100 gift card.

The Results

The universal theme I discovered during these interviews was a profound concern with social isolation. Every single participant mentioned this issue. Interviewees shared how OCD made it difficult for them to maintain relationships and how challenging it was to hide their illness from others. They also recalled their joy and gratitude when discussing moments in which they felt understood.

Their narratives also contained four other common themes:

1.) Logic and patterns of personal concern. Participants often discussed their particular obsessions and compulsions, and the influence those specific thoughts and behaviors had on their daily lives.

2.) Issues of negotiation. People talked about navigating certain types of conflicts as a result of their illness. These conflicts generally fell into two categories: self-negotiation and existential negotiation. In the first, people struggled with the desire to take their thoughts and urges seriously despite knowing they didn’t make sense. In the second, they wrestled with their relationships to the divine.

3.) Positive approaches to the illness. Many interviewees made a point to mention the silver linings they saw in being sick. They noted how OCD made them safer, more empathetic, or provided them with particular skills. Others discussed productive choices they’d made despite living with such a debilitating condition.

4.) Interactions with medical systems. Participants talked about their experiences as patients. For some, dealing with doctors, therapists, and other health professionals helped them understand their experience or relieved their suffering. For others, these encounters were confusing, unhelpful, or even traumatizing.

It’s important to note these themes represent a truly broad range of content. Not every story included every theme, and within those themes, the specific details I heard varied as much as the individuals themselves.

Implications

Say you were to hear four stories: one about someone’s preferred cleaning routine, one about someone’s waning belief in God, one about a good decision made in a difficult circumstance, and one about a doctor’s visit. It’s unlikely you’d consider these stories connected. And yet the data shows they are. The fact that stories with dramatically different content can reflect the same illness highlights the way OCD can remain elusive and camouflaged.

The problem with recognizing these stories as OCD stories isn’t just the variation in content. It’s also in how others hear them. In folklore, we don’t just study cultural expressions. We also study how they move from person to person. “Tellable narratives” travel easily. Both speakers and listeners understand what a certain type of story should sound like and the meaning it’s supposed to convey. If I tell you a tale about a persecuted young woman who escapes a bad home life and marries a prince, you can probably guess you’ve heard Cinderella. If we’re both excited that she went from rags to riches, we share an understanding that her journey is a positive one. In contrast, an “untellable narrative” hits some kind of barrier. If you’ve never heard Cinderella before or think the stepmother is actually the hero, my meaning in telling you the story gets lost. Untellable narratives can be misinterpreted.

This misalignment between the stories people tell and the ones listeners expect to hear happens all the time. We’ve all said things misunderstood by others. Sometimes this process is harmless; other times it results in difficult consequences. Dr. Kristiana Willsey writes about veterans who censor themselves in front of civilian audiences. Because civilians usually only expect to hear tales of “war heroes” or “PTSD survivors,” veterans often choose not to tell the full and complicated stories of their service experiences (Willsey, 2015). Dr. Amy Shuman and Carol Bohmer discuss the case of rejected asylum seekers. If asylum applicants don’t tell their stories of oppression and escape in a way that fits immigration officials’ expectations of what a traumatic asylum story should look like, their applications get denied (Shuman & Bohmer, 2016). If we consider just how different any two OCD stories can be and add the public assumption that OCD is an illness of specific doings (hand washing, checking locks) rather than tellings, it highlights just how difficult it is for most of these narratives to get heard, and heard correctly.

Patient/practitioner interactions can be particularly vulnerable to this type of miscommunication. The problem with considering OCD as just a medical issue is that most people don’t think of their lives as medical events. Practitioners enter the room ready to make sense of problems in clinical terms. Patients enter with stories. They share their concerns in a way that cannot be easily separated from their personal frames of reference or cultural understandings of life. Practitioners are often taught to mistrust the details that emerge from these narratives, to kindly but efficiently work around them in order to do their jobs. But for patients, these details are how they make meaning. If misdiagnoses also occur during these interactions, it’s worth taking a closer look at what’s being lost in translation.

Folklore ultimately offers the promise of new solutions to old problems. It allows us to reconsider how we listen to patients, collect data, and address communication issues— all clear benefits in the fight for better diagnostic care. It is also equipped to help us make sense out of the lived reality of OCD— perhaps uniquely so. I see folklore as an exciting potential ally to traditional research and clinical spaces. My hope is that this partnership can help us work more effectively toward our common goals: a better understanding of OCD, and quicker ease for its sufferers.

Works Cited

Dictionary.com. (2023). Creativity. In Random House Unabridged Dictionary. Random House, Inc. https://www.dictionary.com/browse/creativity.

International OCD Foundation. (2025). America’s OCD care crisis: National findings on the failure of effective OCD treatment to research patients. International OCD Foundation. https://iocdf.org/wp-content/uploads/2025/12/Full-Report-Americas-OCD-Care-Crisis-12-9-2025.pdf.

Lindahl, C. (2012). Legends of Hurricane Katrina: The right to be wrong, survivor-to- survivor storytelling, and healing. The Journal of American Folklore, 125 (496), 139–176. https://doi.org/10.5406/jamerfolk.125.496.0139.

McNeill, L. (2013). Folklore rules: A fun, quick, and useful introduction to the field of academic folklore studies. Utah State University Press. https://muse.jhu.edu/book/27822.

Shuman, A. & Bohmer, C. (2016). The stigmatized vernacular: Political asylum and the politics of visibility/recognition. In D. Goldstein & A. Shuman (Eds.), The stigmatized vernacular: Where reflexivity meets untellability. Indiana University Press.

Willsey, K. (2015). Falling out of performance: Pragmatic breakdown in veterans’ storytelling. In T.J. Blank & A. Kitta (Eds.), Diagnosing folklore: Perspectives on disability, health and trauma. University Press of Mississippi.

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