OCD Awareness!

This past week was Obsessive-Compulsive Disorder (OCD) Awareness Week and October is OCD Awareness Month. OCD has been a a huge part of my lived experience these past few years. I have been in treatment for my OCD and anxiety since June including residential, partial hospitalization, and intensive outpatient programs. 

OCD has wreaked havoc on my life, attacking my values and the things I care about, as it has for many people. I was only diagnosed with OCD about two years ago although I have experienced OCD symptoms for most of my life. This is a huge part of why awareness is so important. I didn’t know I had OCD because I didn’t have an accurate idea of what OCD actually was. 

I have thought of several main misconceptions and things I wish people understood about OCD: 

1. There are many different types of OCD and most have nothing to do with cleanliness.  Other subtypes include harm OCD, relationship OCD, religious scrupolosity OCD, and existential OCD, to name a few. A huge reason why I didn’t think I could have OCD is that I didn’t have a clean room. The media tends to portray OCD as a disorder characterized by wanting things to be neat and orderly. People will say things like “I’m so OCD” to describe when they like this order. There are so many different types of OCD that are completely unrelated to wanting things neat, organized, or clean. Even for someone that struggles with symmetry OCD, it it so much more than “liking things organized.” Someone with OCD related to symmetry or order will have unwanted and intrusive thoughts, also known as obsessions, about assymetry or imbalance and needing to do something to correct this (compulsions). This person doesn’t “like” symmetry, but rather they feel intense discomfort and anxiety when things aren’t symmetrical. It has nothing to do with aesthetic and is often extremely distressing.

2. OCD doesn’t always fit perfectly into these subtypes and can morph throughout a persons life. People often refer to OCD treatment as a giant game of whack-a-mole because OCD is always finidng new ways to creep back into your life. It can shift from theme to theme. For me, this has been very true of my OCD journey. When I was younger, for example, I was terrified of swearing or doing anything sacreligious. I had obsessions about following these rules and would compulsively pray when I thought I broke a rule. This is known as religious scrupulosity OCD, and I do not struggle with this anymore. About a year ago, I started to struggle with contamination OCD, another new subtype. I became obsessed with what might have touched every surface around me. I engage in compulsions like handwashing and avoidance (including using barriers). My OCD has evolved over the years, and will likely continue to do so. I also struggle with multiple subtypes at once, like many others with OCD. As frustrating as this is, it is important to remember that no matter the theme, the treatment is the same. The content of your OCD ultimately doesn’t matter. 

3. Avoidance only increases OCD symptoms and is a really common compulsion. Unfortunately, the only way out is through. OCD wants certainity, so in order to fight it, its important to embrace uncertainity. For example, if I don’t do this compulsion maybe something bad will happen, maybe not. “Maybe, maybe not” is a common tagline in OCD treatment. 

4. OCD isn’t at all rational. I like rationalizing and understanding my thoughts, but often I can’t with OCD. This can be very frustrating. It is important to accept that thoughts can just be thoughts. They don’t have to mean anything. Intrusive thoughts thrive on attention which is what you are giving them by trying to understand.  

5. OCD is incurable but also treatable. I have been in treatment for 5 months, and I can ultimately say that it does work. The “gold standard” treatment for OCD is exposure and response prevention (ERP). This takes advantage of what is known as the cognitive-behavioral therapy triangle. In this triangle are thoughts, feelings, and behaviors. Each of these three things affects each other. The aspect of this triangle that we have the most control over is our behaviors. In changing our behaviors, the hope is that we can eventually change our thoughts and feelings. ERP involves exposures which gradually “expose” people to feared situations that might trigger obsessions or the desire to engage in rituals. Response prevention involves resisting the urge to perform compulsions when these obsessions are brought on. The goal is to sit with the anxiety until it cuts in half. Over time, the peak anxiety will go down and the patient will realize that  that their feared situations is not as scary as they may have thought and that they are able to handle it without engaging in compulsions. In treatment, we use what is called an exposure hierarchy where you start with the easier exposures and work up to the harder ones. The hope is that as you do the easier exposures, the harder ones will become more manageable. 

6. OCD is a doubting disorder and can often make you question if you even have OCD. I often still question whether I even have OCD or not despite all the evidence. For me, this is very distressing because if I don’t have OCD then something else must be wrong with me. 

7. OCD is not something to romantize. Once again, OCD is a potentially debilitating mental illness. It is not a personality quirk. Everyone is not a little bit OCD. OCD is not an adjective.

8. OCD can have many co-morbid conditions. Often people with OCD also struggle with depression and other anxiety disorders such as generalized anxiety disorder and social anxiety disorder. Other comorbid conditions include eating disorders and ADHD. I struggle with depression, generalized anxiety disorder, social anxiety disorder, and two eating disorders - Avoidant Restrictive Food Intake Disorder (ARFID) and Anorexia Nervosa. OCD and anxiety have played a huge role in my depression. As my OCD and anxiety became worse, my depression worsened as well. It was easy to feel hopeless when I was struggling so much with my OCD. I also think OCD has largely contributed to me developing eating disorders. I have obsessions and compulsions related to food being contaminated which plays into my ARFID and continues to restrict the variety of foods I will eat. I also became obsessed with the numbers on the scale and maintaining a specific body look which contributed to my Anorexia. 

If you are struggling with OCD, you are not alone. It is a horrible disorder, but there is hope. I can say 5 months into treatment that I am doings things I never thought I would be able to do because of my OCD. The journey is hard, but I know you have the strength to keep pushing. If you don’t have OCD, I hope you learned something and are able to correct somone the next time they say they are “so OCD.”