OCD Awareness Week 2024: OCD is Hard, But Simple Once You Understand It
I’ve never considered myself a “smile and nod” therapist. I will, however, smile and nod enthusiastically if you ask me, “Have you heard anything that weird before?”. I’ve probably done it myself, too. The hesitancy I notice in new clients’ voices signals that despite any well-intentioned research they’ve done on their own (browsing the OCD subreddit, watching a few videos, and maybe even cracking open a DSM-5), there’s often an inherent misunderstanding of the disorder. To truly be aware of something, you must first understand it. For example, M. Night Shyamalan is aware of OCD but, unfortunately, his grossly inaccurate depiction of it earned him a slap on the wrist from our friends at the International OCD Foundation. He clearly does not understand the disorder. Reid Wilson, PhD, said in his 2019 IOCDF award acceptance speech, “In the beginning, this work is frightening, difficult, and takes courage, but it’s not complicated. It’s hard, but it’s simple once you understand it.” So, as OCD Awareness Month approaches in October, I’d like to spread awareness by creating a deeper understanding of this disorder and its diverse presentation.
The diverse, hidden, confusing, creative, frightening, ever-changing, elusive side of OCD
On the one hand, nobody’s OCD is exactly the same, and it can be confusing to determine what is an “OCD thought” or an “OCD compulsion”. IOCDF’s compulsive activities checklist includes 207 compulsions regularly seen in people with OCD. That’s, like, 206 more than most people realize exists. And if your compulsion is too “out there” to make the cut, there’s a free-response section eagerly awaiting your input. Now, let’s get something clear- no compulsion is too “out there”. Unique and complex compulsions are typically a sign of a healthy, creative, but overprotective brain. In fact, the content of your OCD is only a small piece of the puzzle. It might provide clues about a core fear that the OCD has attached to, but it doesn’t define who you are or change the treatment. Let’s take a look at a few common compulsions alongside their lesser-known counterparts:
Decontamination compulsions
Well known
Washing your hands ritually and/or excessively
Disinfecting and/or cleaning your environment or your possessions
Avoidance of certain foods which may be contaminated
Lesser known
Having family or friends perform any of the above on your behalf
Performing, reciting, or thinking ritually to avoid or remove contamination
Checking compulsions
Well known
Doors and windows, light switches, stoves
Whereabouts of sharp objects, extinguished cigarettes or matches
Lesser known
What you have read, your writing for obscenities or errors
Driving situations (to verify that you did not hit someone or something with a vehicle)
That you haven’t left anything behind when you leave any place
Your own memory (by asking yourself or others), repetitively apologizing or asking for forgiveness, That you have made the right decision
Magical/Undoing Compulsions
Well known
Reciting or thinking of certain words, names, sounds, phrases, numbers, or images
Having to physically arrange objects in your environment in special ways
Stepping in special ways or on special spots when walking
Lesser known
Repeating an activity with a good thought or image in mind
Washing off ideas or thoughts
Touching certain things in a special way
Perfectionistic Compulsions
Well known
Keep your home or living space perfectly clean and orderly
Keep remaking decisions to ensure picking the perfect one
Lesser known
Remember or memorize things perfectly or in a special order
Be perfectly religious, perfectly confess about all your thoughts or behaviors to others
Perform activities until they feel just right
Keep extensive lists or records of certain things
Counting Compulsions
Well Known
Repeating behaviors a special number of times, performing behaviors an odd or even number of times
Lesser known
The occurrences of certain body functions (e.g., breathing, steps, etc.), simply to count (unconnected with any special idea or activity)
Mental Compulsions
Well known
Make mental lists or arrangements
Keep reviewing past situations to try to remember or understand them
Repeat your own or someone else's words in your mind
Lesser know
Analyzing your thoughts to determine if they are (or were) appropriate, analyzing your thoughts to determine if they are really obsessions or not
At the end of the day, if you act (physically or mentally) with a sense of urgency, to gain certainty and/or relieve anxiety, it may qualify. Notice how this list is sorted by “well-known” versus “lesser known” and not by commonality. In my experience, clients experience the “lesser known” compulsions just as often, if not more than the well-known ones. Understanding the breadth of OCD presentation can validate individuals' experiences and prompt them to seek treatment and other resources earlier in their OCD journey.
A lot is going on here. It can be frustrating and discouraging to learn that OCD has infinite ways of keeping you “stuck”. Our obsessions and compulsions can shift throughout life, depending on what feels most important to us. It can attach to life transitions (like getting a new job or entering parenthood), new relationships, or follow a traumatic event. Chances are, if you feel uncertain about it and it’s important to you, OCD will meet you there.
The simple, predictable, treatable side of OCD
On the other hand, no matter how amorphous your OCD may seem, at its core, it’s made up of just a few basic components. If we can understand what I call the “anatomy” of OCD (a description of the body structures of living things), we can simplify its treatment. And it is alive! It will adapt as you gain knowledge, squirm as you begin to challenge it, and when it’s on its last breath, it will make you doubt its very existence by asking, “Are you sure you even have OCD, man?”. It is “the doubting disorder”, but has its own Achilles Heel.
A model for describing ERP treatment for OCD
Subjective Units of Distress (SUDS)- Subjective Units of Distress (SUDs) is a scale used to measure the intensity of distress, anxiety, or discomfort a person feels in response to a particular situation, thought, or trigger.
Time- OCD is experienced across time. We feel a sense of urgency alongside the distress, and compulsions only relieve anxiety temporarily.
Event- At the beginning of an OCD loop, we experience an “event”. This could be an intrusive thought (like punching a stranger or blurting out an obscenity), noticing something in your environment (like a contaminant), a judgment of your thoughts (Does this mean I’m a horrible person? Am I a threat to society?), or just a feeling that something is “off”. Everyone, including people without OCD, experiences these events and probably some subsequent anxiety. Without OCD, it can be easier to write them off as “just a weird thought” or be comfortable saying, “Yeah, but that probably won’t happen”.
OCD stuff- For people with OCD, being “pretty sure” isn’t enough. Our OCD causes us to have a low tolerance for uncertainty, a high sense of personal responsibility, and more intense feelings of guilt. Beneath our obsessions, there may be a core fear that we’re trying to protect against (like being alone, morally flawed, a bad person, or damned). Additionally, neurological components are hijacking our ability to rationalize and move on. This “OCD stuff” intensifies SUDS rapidly and we can become emotionally dysregulated. Nobody likes feeling this way, so we engage in compulsions.
Compulsions- Our brains are trying to be helpful here. We manufactured our own escape route. The compulsions never have to make sense or be logical, but if they relieve your anxiety, make you feel safe, certain, or in control again, they’ll be reinforced again and again.
Exposure and Response Prevention (ERP)- ERP is the gold-standard treatment for OCD. In ERP, we learn to accept uncertainty and sit with discomfort without engaging in compulsions. This teaches our brain that we don’t need compulsions anymore. When we stop doing compulsions, we starve the beast and OCD symptoms decrease. Notice how the ERP line in the chart ends up in the same place as the compulsions line. With practice, we can create a new, more sustainable curve.
Putting it together- I encourage you to practice using this chart to decode your own OCD. Try to identify what “event” triggers anxiety, and what “OCD stuff” intensifies it. What compulsion do you use to regain certainty, calm, and control? Can you challenge yourself to resist the compulsive urge, to accept uncertainty, and to regulate yourself as you return to low SUDS on your own?
Conclusion
I hope this explanation of OCD has deepened your understanding of the disorder and validated your experience. It isn’t surprising that something so complex and stigmatized flies under the radar. I also hope that by simplifying its components and treatment, you feel encouraged, powerful, and capable of recovery. If you found this post helpful and you’re interested in beginning your OCD recovery journey, please reach out to our team to schedule an intake appointment.
In the meantime, here are several resources to get informed, involved, and spread awareness:
1. Attend OCD Awareness Week
In 2023, OCD Awareness Week was filled with Seminars, Q&As, Storytimes, Art and Film discussions, and more! The 2024 schedule will be released on the IOCDF OCD Awareness Week page shortly.
2. Participate in an OCD Walk
Join the One Million Steps for OCD Walk, a nationwide event organized by the International OCD Foundation (IOCDF). These walks raise awareness and funds for OCD research and support programs. You can participate in person or virtually from your city. Find a walk near you on IOCDF's Walk Page.
3. Spread Awareness Online
Engage on social media using hashtags like #OCDWeek and #OCDawareness. Share information about OCD and its impact. Infographics, stories, and educational materials are found on the IOCDF’s OCD Week Page.
4. Attend Virtual or In-Person Events
Throughout October, the IOCDF and its affiliates host webinars, conferences, and panels. These events often feature experts discussing OCD treatment, advocacy, and lived experiences. Check out the list of programs on the IOCDF Events Page.
5. Join the Advocate Program
The IOCDF Advocate Program empowers individuals to become advocates in their communities by educating others about OCD. Learn how to become a grassroots advocate and participate in public policy efforts through IOCDF’s Advocate Page.
6. Donate or Fundraise
You can directly support OCD research and resources by donating or creating a fundraising campaign. Learn more about supporting the cause on the IOCDF Donation Page.
Additional Resources:
Here are a few of my favorite books, blogs, podcasts, and social media channels on OCD.
Books:
“The OCD Workbook: Your Guide to Breaking Free from Obsessive-Compulsive Disorder” by Bruce Hyman and Cherry Pedrick
A comprehensive self-help book with exercises and strategies to manage OCD symptoms.
“Freedom from Obsessive-Compulsive Disorder” by Dr. Jonathan Grayson
A guide that explains OCD and ERP therapy, with practical exercises to confront obsessions and resist compulsions.
“Everyday Mindfulness for OCD” by Jon Hershfield and Shala Nicely
Focuses on using mindfulness-based strategies to manage OCD, blending traditional cognitive-behavioral techniques with mindfulness practices.
“Stop Obsessing!” by Reid Wilson and Edna Foa
A self-help guide that introduces behavioral therapy techniques to overcome obsessions and compulsions.
“Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life” by Shala Nicely
A memoir offering a personal look at the author's battle with OCD and her journey to recovery, providing inspiration for others facing similar struggles.
“You Are Not a Rock” by Mark Freeman
A guide to dealing with anxiety and OCD through emotional flexibility and mental health skills, using an engaging and compassionate tone.
“The Mindfulness Workbook for OCD” by Jon Hershfield and Tom Corboy
Offers practical exercises and mindfulness techniques specifically designed for managing OCD, blending mindfulness with exposure therapy.
Blogs:
Offers personal stories, expert advice, and resources on OCD. Topics include treatment, advocacy, and managing OCD subtypes, with contributions from both professionals and those with lived experience.
Provides educational content on mental health, including OCD. It covers symptoms, treatments, and personal recovery stories, with insights from both professionals and individuals.
Podcasts:
A mental health podcast that focuses on providing tools and techniques to manage OCD and anxiety. Kimberley is a licensed therapist and integrates cognitive-behavioral therapy and mindfulness techniques in each episode.
Features interviews with people who have lived experiences with OCD, as well as professionals sharing their expertise. It covers a wide range of topics, including various OCD subtypes, treatment approaches, and recovery journeys.
Youtube Channels:
Mark Freeman offers educational videos on OCD and anxiety, focusing on emotional health, recovery strategies, and practical skills.
NOCD's channel provides resources and videos about OCD treatment, ERP therapy, personal stories of individuals managing OCD, and live Q&A sessions.
The IOCDF channel features webinars, expert panels, and interviews that cover a range of topics related to OCD treatment, advocacy, and research.
Instagram Creators:
Kimberley Quinlan, Jenna Overbaugh, Juliet Gustafson, Mary Feldman