In elementary school, I was diagnosed with Obsessive Compulsive Disorder after months of washing my hands until they bled and fears of leaving the house that left me with teary-eyed panic attacks almost every day. I’m generally one to question the designation of things as “disorders” (all brains and bodies work a bit differently and what works for one person may not work for another), but OCD was debilitating. Normal kid things were major efforts for me; going to school was a nightmare where I thought that if I touched any surface or didn’t manage my breath just right I would die; going to friends’ houses was panic-inducing; going on field trips required that my parents be chaperones. I was lucky to be diagnosed and have early access to therapy. I had classic CBT therapy, which helped reduce my panic attacks and address my fears, and biofeedback, which helped me gain awareness when I was focusing on obsessions.
Life went on with OCD ups and downs; that’s how it is for many of us. However, during the COVID pandemic I had a major spike in my OCD symptoms and started realizing that many “quirky” anxiety-related behaviors I had been struggling with were probably related to the OCD. That’s when I found NOCD, an OCD-focused organization offering online Exposure Response Prevention therapy.
I learned so much about OCD and managing its symptoms through NOCD. ERP changed my life because it introduced me to a new and sustainable way to decrease OCD symptoms: instead of focusing only on awareness of my fears and obsessions, I was now learning to avoid doing compulsions. ERP stands for Exposure Response Prevention: exposure to triggering situations triggers compulsions, and the trick is to not perform the compulsion that your mind tells you must be done to calm down. As I practiced this, I realized something important – if I didn’t practice a compulsion, nothing bad happened. I learned to trust myself; if something bad ever did happen, I could and would handle it.
There is a lot the average person doesn’t know about OCD. I was diagnosed more than 10 years ago and I’m still learning! We see OCD portrayed in the media as neatness, organization, and quirkiness when in reality OCD is listed as the 7th most debilitating illness globally. Someone with OCD may appear high -functioning (me before therapy), on top of things (me before therapy), and happy (me before therapy) while struggling so much that they can’t see themselves going on anymore (me before therapy). As a kid I genuinely did not think that I would live to be in my twenties and if I did live that long I never thought I’d be able to survive on my own. But here I am! So, let me share with you some little-known facts about Obsessive Compulsive Disorder:
OCD is listed as one of the top 10 debilitating disorders by the World Health Organization. The 7th most debilitating illness, in fact.
OCD is known as the “Doubting Disorder.” OCD loves to bombard the brain with negative “what if’s.” For me, I had near constant thoughts like “What if I don’t wash my hands and I contract xyz bacteria and I die or accidentally kill someone else?” or “What if I look over the bridge and lose control and throw myself over the edge?” Thoughts like these made it hard to take action, try new things, or make decisions.
OCD is associated with high risks of both depression and suicide.
Offering reassurance to someone dealing with an obsession can actually exacerbate OCD symptoms. Reassurance will probably calm down someone having an OCD panic in the immediate moment, but relying on reassurance can easily become compulsive. For me, I used asking for reassurance from loved ones as a compulsion when I couldn’t do the original compulsion I wanted to perform, like taking a shower after touching something.
OCD can make someone feel like a horrible person, doubting every decision they try to make and making them feel constantly guilty. Those negative “what if’s” can lead to a lot of feelings of guilt and doubt, where someone might feel like if they don’t perform a compulsion, they are a bad person and causing bad things to happen. This feeling in particular is related to certain subtypes of OCD that I struggled with, such as “magical thinking OCD.”
No new medication for OCD has come to market since 1997. Trials are currently being run for new medications!
OCD is not just liking organization and neatness, nor is it a cute quirk. It’s totally possible that someone with OCD may have the compulsion to keep things organized and neat. However, the disorder comes with high levels of stress and fear that something bad will happen if things are not kept organized and neat, with difficulty focusing on anything else if the compulsion is not performed.
ERP (Exposure Response Prevention) therapy may seem scary, but it can really change the life of someone struggling with OCD. Facing fears is terrifying – if it wasn’t, everyone would do it and they wouldn’t be called fears. But ultimately, learning to address my fears helped me separate fears that were rational and fears that weren’t, and helped me lean into the fact that no one is ever truly 100% sure of anything. That realization that uncertainty will always be around, and learning to deal with that uncertainty, is a pivotal step in OCD recovery.
Thanks to NOCD, an ERP therapy session is being donated to someone who is struggling to afford care because I’ve shared my story.
Here are a few resources that helped me when my OCD was really debilitating:
Urban Habitat 