Written by Fran Kuehn, LICSW, M.Ed.
PLEASE NOTE: This blog post includes mention of suicidality. If you are in a crisis, or you are ever feeling suicidal or unsafe, please go to your local emergency room, or call 911 or the 988 Suicide & Crisis Lifeline by dialing “988” (you can also access online at www.988lifeline.org.) Hope is available for all members of the OCD community, only a call or a click away.
Even though she was masked and the video call was grainy, I could see the distress in my client’s eyes as she sat with her hospital social worker. We were checking in on her treatment progress after her admission for suicidality. Something had come up, and they wanted to let me know about it. It seemed like an exposure in itself, and I could feel something big coming.
“My obsessions involve you. That’s why I couldn’t tell you. Killing myself seemed like the only escape from the shame.”
It was only after being hospitalized that my client could disclose that her intrusive thoughts—taboo and unacceptable to her—were themselves the reason she could not tell me about them, and as such, could not overcome them. The meaning she made of having these thoughts was self-criticism turned into self-hatred in an echo chamber, the shame locking her in with no way out.
I write this during OCD Awareness Week, when clinicians, researchers, sufferers and their loved ones promote best practices, come together in solidarity to explore treatment, and celebrate accomplishments in combating this misunderstood illness. Much has been done in recent years to publicize OCD, to combat harmful stereotypes, and to improve access to high-quality treatment. OCD sufferers have perhaps never been in a better position to get the care they need.
However, despite all the progress, researchers and clinicians need to do more to address an important consequence of OCD—shame. While all OCD sufferers are in distress and deserve the best treatments available, research has shown a relationship between certain OCD themes and symptom-based shame. Sexual, violent, and blasphemous intrusions in particular are thought to cause significant distress and are associated with greater pathology. One hypothesis is related to the OCD-related distortion of “thought-action-fusion”—a belief that merely having a negative thought holds the same value as committing a negative action (1). This contributes to shame because despite not wanting these intrusions to occur, the sufferer believes they are bad because they’ve had them.
Shame motivates social withdrawal and acts as a treatment barrier. This is hardly surprising given how non-OCD sufferers view sexual, violent, and religious obsessions more negatively than contamination or “just right” OCD themes, suggesting that societal messages contribute to shame in OCD. At the same time, disclosing the content of thoughts is the first step in breaking the cycle of avoidance in OCD. Exposure to the feared thought itself is necessary for progress to be made. But how do we help our clients do this when shame stands in the way?
Digital technology and social media offer potentially powerful tools in combating shame in OCD (2). One of the great revolutions in social media is the way that peer-to-peer support can happen worldwide, instantaneously. As of 2021, at least six billion people across the globe have a smartphone (3). The expanded capacity to connect with others online represents a critical point in a sufferers’ recovery experience. It may be the first time they have expressed anything about their experience with OCD—and be able to see the similar experiences of other individuals. Self-expression is a powerful antidote to stigma, and digital spaces facilitate this greatly.
Digital technology users can choose their level of engagement on their own terms—when and what to post, whether and when to reply—a key component of taking back control from OCD. Posters can remain anonymous as well, and still garner the benefits of learning how others face their illness. Often, this experience can motivate sufferers to seek help. Digital apps, webinars, YouTube, Twitter, podcasts, and other mediums can offer lifelines to those who would suffer in isolation otherwise.
In one study of a “treatment-resistant” OCD sufferer, digital communication allowed them to disclose the most difficult material over text messages first, creating just enough psychological distance from threat to allow them to name their experience, despite the shame associated with it (4).
As a clinician, I want my clients to believe that I will accept them unconditionally no matter what their OCD makes them believe about themselves. They deserve great care and compassion. Yet if I don’t help them understand up front that shame is a normal consequence of OCD—that their shame does not belong to or define them, and that we can defuse (detach and get distance) from shame while we engage in treatment—I risk leaving my clients locked up in the prison OCD builds for them.
As a community, we should collectively agree to center the subject of shame in OCD. We should do this in digital spaces too so that sufferers can find the message wherever they are. This is especially important to address cross-culturally, given the disproportionate lack of representation of ethnic minorities in OCD treatment despite the disorder’s universal prevalence (5). Using digital technology to our advantage can be an important strategy in assisting our clients with disclosure. Encouraging them to interact in safe online spaces with other sufferers can aid in reducing their isolation.
When we focus on the role that shame plays in maintaining the suffering caused by OCD, we can name and externalize the pernicious way that OCD leads one to feel as if they are both victim and perpetrator. Instead, we can shift the consequences of shame from the sufferer to the responsible party. It’s a message I hope all people with OCD, including my clients, hear loud and clear. This is OCD, and it’s not your fault. There is nothing to be ashamed of.
Fran Kuehn is an Associate Professor of Practice at Simmons University School of Social Work in Boston, MA, and a Doctoral Candidate at the University at Buffalo School of Social Work. Fran has a private practice where he treats OCD in Newton, MA, and can be reached through his website www.frankuehn.com or via Twitter @Frankuehn.
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