The “Invisible” Disorder: OCD Stigma & How We Move Forward

When I asked to use my thesis to analyze current societal perceptions of obsessive-compulsive disorder (OCD), I was told to wait to change the world until after I earned my PhD. Fast forward to a successful advocacy on the predictors of meeting expectations, and I was ready to see what I could do to decrease social stigma and increase empathy toward people like me, or those diagnosed with OCD. To change societal perceptions about OCD, we must first understand what those perceptions are. The purpose of this post is to share key findings about pre-service teachers’ (PST) perceptions and stigmas of OCD, and how we can increase awareness within our schools and communities.

What is OCD and why is it important to understand it?

OCD is an anxiety disorder that involves obsessions and compulsions (Langham, 2022); While OCD symptoms vary, the disorder is based on fear, anxiety, and uncertainty (Culkin & Culkin, 2021). Someone who suffers from OCD experiences obsessions and compulsions that can be overwhelming and have detrimental effects on their daily life.

Today, the general public’s understanding of OCD is limited to certain subtypes of OCD, such as contamination and repetitive checking (Ponzini and Steinman, 2022). Much less understood are other subtypes, such as those related to disturbing or intrusive thoughts and their debilitating effects on the suffering individual (Langham, 2022). This limited general knowledge of OCD leads to narrow conceptualizations, resulting in the belief that OCD is not a true disorder. While I cannot speak for other people who suffer from OCD, I can speak from my own lived experience: these narrow conceptualizations minimize my disorder and the challenges I have faced because of it. Although OCD may be an invisible disorder, we should not treat it as such.

Some findings represent a bigger problem.

In the summer of 2023, I distributed a survey to 183 PSTs at a public 4-year university in Tennessee to understand their perceptions and potential stigmas toward OCD. A total of 74 responded and, after eliminating missing cases, 57 responses were used. Of them, 6 had been diagnosed with OCD, 10 had a family member with OCD, and 23 knew someone outside their family with OCD. The majority (74%) were women and white (72%). Figure 1 shows PSTs’ responses to 2 statements regarding OCD.

Half of the PSTs surveyed agreed that everyone has a little OCD, while 50% disagreed. The majority (83%) believed that OCD was not a real disorder that causes anxiety and stress.

Figure 1

PSTs’ Perceptions of OCD

What does this mean and what can we do about it?

While disappointing, it’s not surprising that respondents were divided on whether everyone has a little OCD or not. Considering that OCD is portrayed on television and other entertainment platforms as a frustrating trait (McGrath, 2023), it also makes sense that the majority of respondents believed that OCD is not a serious mental disorder. While the above findings represent those of a small subpopulation within education, they are supported by previous social research on OCD (Simonds and Thorpe, 2003).

So what can we do? How can we do the invisible visible? One place where we can begin to raise awareness about OCD is the classroom. If teachers are not aware of what OCD looks like in the classroom or confuse OCD symptoms with ADHD or other common disorders, it is very difficult to help a child with OCD. When OCD can be identified early in the classroom, students have opportunities to learn coping skills and get the help they need. Additionally, negative stigmas or perceptions of OCD can be reduced (Chaturvedi et al., 2014).

Here’s what you can do to help raise awareness about OCD and decrease social stigma:

For post-secondary educators:

  • Learn about the resources your university offers to help students with OCD.
  • Collaborate with experts in the field of mental health and disability stigma to educate your campus community about OCD, for example, through a panel discussion.

For K-12 educators:

  • Look for professional development opportunities that focus on how educators can support students with disabilities/disorders.
  • Talk to your school district psychologist about OCD and how it manifests in the classroom.

For friends, family and those who want to know more:

  • Learn more about OCD and talk about it! By talking about OCD with our friends and family, we can create a chain reaction of knowledge and awareness.
  • Remember that OCD is a serious mental disorder that causes anxiety and stress; is No a personality quirk.
  • Remember that with the right tools, people with OCD can live happy, normal lives.

Questions for reflection:

  • What do I imagine when I think of someone with OCD?
  • What resources are available in my community/school for OCD support?
  • What can I do in my community to raise awareness about OCD?

Author’s note: The above blog is based on the findings of a larger quantitative research study that was approved by an Institutional Review Board. The author was diagnosed with OCD at age 7 and speaks from both his personal experience and current research. Any correspondence relating to the above blog should be addressed to Dr. Kinsey Simone at [email protected].


References:

  1. Culkin, D.T. & Culkin, M.A. (2021). OCD and Marriage: Ways to Reshape Your Lives Together. Specialized Press, Inc.
  2. Langham, D. (2022). Why is there a stigma around OCD? IMPULSE. https://impulsetherapy.com/qué-hay-un-estigma-alrededor-ocd/
  3. McCann, MC, Bocksel, CE, Goodman, WK and Storch, EA (2017). Obsessive-compulsive disorder and suicidality: Understanding the risks. OCD International Foundation. https://iocdf.org/expert-opinions/obsessive-compulsive-disorder-and-suicidality-understanding-the-risks/#:~:text=While%20previous%20research%20had%20suggested,suicidal%20thoughts%20( Kamath%2C%20Reddy%2C
  4. McGrath, P. (May 26, 2023). What it feels like to have OCD: Why OCD thoughts feel real. NOCD. https://www.treatmyocd.com/education/what-is-it-like-to-have-ocd-and-why-it-feels-real
  5. Nully, D. D. (2008). The adequacy of response rates for online and paper surveys: what can be done? Assessment and Evaluation in Higher Education33(3), 301–314. https://doi.org/10.1080/02602930701293231
  6. Ponzini, G.T. and Steinman, S.A. (2022). A systematic review of public stigma attributes and symptom subtypes of obsessive-compulsive disorder. Stigma and Health, 7(1), 14–26, https://doi.org/10.1017/sah0000310

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