“I’m so ‘OCD’.” “Wow, your space is so neat! You must be ‘OCD’.” “‘OCD’ just means you like to be really organized.” These are phrases that we often hear when OCD is brought up: the phrases that pepper pop culture content and media, as well as things people state in real life. We’ve had enough of it. OCD is not, has never been, and will never be an adjective.
Contrary to popular beliefs, Obsessive-Compulsive Disorder is a mental condition, specifically a form of anxiety, that must be diagnosed by a professional. It is, as the American Psychiatric Association (APA) states, “a disorder in which people have recurring, unwanted thoughts, ideas or sensations (obsessions). To get rid of the thoughts, they feel driven to do something repetitively (compulsions).” Your authors, who will be referred to as Authors ‘A’ and ‘B’, have experienced the struggles of living with OCD for the majority of their lives and would like to share their experiences.
Our Experiences
Author A: I was diagnosed with OCD at 6-years-old, after I told my mom that it felt like there were “little men running around in my head, telling me what to do” [a young child’s description of intrusive thoughts]. I have been on medication for the entirety of my diagnosis, and I cannot imagine what my life would be like without it. For me, OCD presents primarily as intense germaphobia and intrusive thoughts. Every winter, my hands crack and bleed from the compulsive hand washing I am subjected to. I never touch door knobs, only opening them with my sleeves. I use copious amounts of hand sanitizer. I feel gross, “germy”, when other people do things, too—when someone sneezes into their hand or licks their fingers to turn the pages in a book—I don’t just think those actions are gross. I feel dirty, used, worn down. Sometimes, I find myself washing my hands for five, even ten minutes, soaping and lathering them up over and over again, wasting copious amounts of soap and water. My hands sting and turn red from the extra hot water I turn on. Even though it hurts, and I know that my hands are clean, stopping those thoughts and actions in their tracks is just about the hardest thing in the world at that moment. I feel silly, frustrated, stupid, annoyed, angry. I feel pissed off, actually, that my brain is actively working against itself, telling me what to do and say and feel. And that if I don’t obey its commands, terrible things will happen — to me, to my family, my friends, even random strangers.
I also suffer from anxiety and the occasional panic attack, but these symptoms, as well as the more severe ones described above, have been curbed significantly after nine months of talk therapy this past year. When I feel an intrusive thought coming on, I make space to listen to it (ignoring it just makes it 100x worse), and then I put it away. This may sound like I am just repressing these thoughts, but by first acknowledging them, I am recognizing that yes, I do think these horrible thoughts, but I am also remembering that I am not my intrusive thoughts. I can say ‘no’.
Author B:
Author B: I was officially diagnosed with OCD when I was 11- years-old, though looking back, I was definitely struggling with it for far longer. I can remember being very small and not being able to stop brushing my teeth, to the point where my mom had to set a timer for something like four minutes and would make me stop after it went off. Around the time I was diagnosed, I was spending so much time washing my hands as a compulsion to subdue my intrusive thoughts that they would bleed from the dryness. I was embarrassed by the way they looked, but I couldn’t stop washing my hands because the thoughts in my head were insisting that they were dirty, even though, reasonably, they weren’t. I tried to deal with the situation myself, but with the constant fear that I was contaminating other things and people on top of a recent move and struggling to make new friends, I finally told my mom what was wrong, and she found me a therapist.
At eleven, I had not heard of OCD, and I wasn’t aware that there were others with my condition, and finding out that I wasn’t alone was very comforting. However, therapy doesn’t equal a cure. OCD is something people struggle with for their whole lives and something I will always have to deal with. I was eventually put on medication, of which I tried about four different brands over the years until I found one that worked for me and remained in therapy. After another move during the summer before my sophomore year of high school, I began to really struggle again and was put into a partial inpatient program for teens with OCD. This program used Exposure Response Therapy (ERP) to help desensitize us to our intrusive thoughts and hopefully reduce the frequency of our compulsions. It was not something I enjoyed, though it did help me a bit until my school couldn’t allow any more absences, and I had to quit the program and return to school full-time. I’ve been doing quite well since then and haven’t had any significant relapses, and I hope that in writing this article, I will be able to meet some people who share my struggles.
Facts and figures
One thing that we both only recently found out is that there are multiple types of OCD, relating to different types of intrusive thoughts and sometimes but not always involving compulsions. An awesome resource if you’re interested in learning more about the different forms OCD takes is from the International OCD Foundation, linked here.
OCD is not uncommon—in fact, “2.5 million adults or 1.2% of the U.S. population” have been diagnosed with OCD. Many celebrities struggle with it just like we do. Some examples include Howie Mandel, Leonardo DiCaprio, Cameron Diaz, Justin Timberlake, Amanda Seyfried, Camila Cabello, Daniel Radcliffe, and Nicholas Cage, to name a few. People don’t tend to be particularly outspoken about their struggles with the disorder, however, and we wish that would change because the more information that is available, the less stigmatized OCD will become.
One TikTok-famous celebrity named Esmé Louise James, however, has spoken up about her experiences. Ms. James is a historian who makes videos on TikTok about what she refers to as “Kinky History,” and she recently posted a video diverging from her usual content that discussed her struggles with Obsessive Compulsive Disorder. You can watch her video here.
Media Representation
One thing that really irks both of us is the near-total lack of media representation as a whole around OCD. Of the few places we have seen OCD representation in entertainment and media, none have been accurate. Of course, everyone’s experience with OCD is different. We do not mean that our specific subtypes of OCD are not being recognized, although that is true as well. Rather, as mentioned above, OCD is almost always represented on a surface level as an adjective or a “quirk” and, frankly, as something for a character to overcome.
There are, however, some accurate portrayals of OCD to be found. We hope that there are many more than this, but the two of us have found representation of ourselves, a clean, unwarped version, in the following books: “Turtles All the Way Down” by John Green, “Counting by 7s” by Holly Goldberg Sloan, and “Every Last Word” by Tamara Ireland Stone.
OCD is not something to overcome, but it is still a mental health condition that can take a heavy toll on the mind, body, and spirit. We hope that by sharing our experiences, with full recognition that we are just two of millions with OCD, we can help to erase the stigma, pave the way for affordable, higher quality therapy and mental health resources, and, perhaps most importantly, remind you, dear reader: You are not alone.
Resources We Recommend:
- Depression/suicide text line: 741741
- Suicide Hotline: 800-273-8255
- Self-Harm Hotline: 800-366-8288
- HopeLine: 919-231-4525 or 1-877-235-4525
- International OCD Foundation
- Headspace: a guided meditation app.
- MindDoc: a monitoring and self-management app for mental health.
- Wysa: an AI friend where you can chat about your day and/or feelings, stress, anxieties, thoughts, etc., and they will provide you with resources and support.
- Reflectly: a journal and mood-tracking app.
- NOCD: an Exposure and Response Prevention (ERP) therapy service made specifically for people with OCD (they take insurance!)
- Intrusive Thoughts: an online collection of resources that aim to destigmatize intrusive thoughts and OCD as a whole. Check out their new chatbot, Pax the OCD Bot, here!