Living with OCD is way more complex than the ‘neat freak’ stereotype

For a long time, my only exposure to OCD (obsessive-compulsive disorder) came from the TV show Glee. Emma Pillsbury, the school’s guidance counselor, was characterized as a “neat-freak” whose issues were limited to constantly washing her food, her hands, and the couch in her therapist’s office.

Because of this, I believed that to have OCD, one must be obsessed with cleaning, wash their hands until they bleed, and never feel satisfied with an organized space. For some people, this is their reality. But that’s often a small part of the story for the 2.2 million U.S. adults who have the condition—and in my case, this limited view of OCD prevented me from recognizing it in myself.

Obsessive-compulsive disorder is defined as a chronic condition where someone has uncontrollable, reoccurring thoughts and/or behaviors that a person feels like they must repeat or revisit over and over. These thoughts and behaviors are often disturbing to a person with OCD, and can take up their focus to the point of disrupting their daily lives. A person’s obsessive thoughts often compel them to perform some kind of action—for example, a person like Emma Pillsbury who might have an extreme fear of germs very likely washes their hands or cleans their desk constantly in order to address that fear.

For me, it started with a fixation on my mother’s words. From a young age, every time she spoke, I had to hear every word. And I mean every word. If she called me while I was in the car, I would force whoever was driving to turn off the music so that I wouldn’t miss anything she said. If we were watching a movie and she had something to say, I’d make her hit pause so that her commentary wouldn’t be drowned out by the film. Anything I’d miss, I’d beg her to repeat word for word. If she couldn’t remember, my heart would beat rapidly, tears would well up in my eyes, and I would spend the next 20 minutes trying to get my body to stop shaking. It felt like I couldn’t live without knowing what she said.

Every day I told myself that I was the worst person to ever walk this Earth for having such horrible fantasies and thoughts.

Then at the end of eighth grade, when I was supposed to be celebrating the end of middle school—going to dances and class trips with friends, preparing for graduation—I began experiencing intrusive thoughts. Intrusive thoughts, which are essentially intense, anxiety-inducing thoughts that can get stuck in a person’s mind, can happen to anyone every so often. But as I only learned later, when you have OCD, the thoughts are uncontrollable and, frankly, terrifying. I was still a child at 14, yet vivid scenes of murder and suicide were playing out in my head constantly, from the moment I woke up until the moment I went to bed. These thoughts made me feel like I was impure and immodest; the opposite of how I was taught a “normal” girl was supposed to be. And it made me turn on myself—every day I told myself that I was the worst person to ever walk this Earth for having such horrible fantasies and thoughts.

That summer, sitting on the terrace of my grandmother’s apartment in India, I was tired of feeling this way. I grabbed my phone and typed my intrusive thoughts into Google. I briefly skimmed through a blog post by someone who described having similar thoughts to mine.

“You could have OCD,” one user commented. “That could be the reason you’re thinking these things.”

I brushed off what I had read as completely unhelpful. There is no way I have OCD, I thought. I have never cared about mess. 

Over time, I started thinking about these violent images less often. I was occupied by the newness of high school, making new friends and spending most of my time distracted by joys I hadn’t experienced before. I still had intrusive thoughts, and I still felt distraught every time my mother spoke, but I thought things had become more manageable because I was too busy to fixate on any disturbing thought for long.

During my sophomore year of high school, after experiencing bouts of severe depression and anxiety—which I now know often co-occur with OCD—I decided to see a therapist. It was there that I talked to her about my obsession with words and sentences, and my intrusive thoughts. At the end of that session, she diagnosed me with obsessive-compulsive disorder. It’s been four years since that appointment, but it will always be the first moment I felt seen.

While the worst of my intrusive thoughts have calmed post-puberty (thanks in part to therapy and medication to help manage my symptoms), some of my fears and compulsions have changed as I’ve gotten older. Feeling pure is still a big trigger for me, but now that’s evolved from my thoughts to a heightened sense of touch. I’m afraid of garbage, because encountering it makes me feel dirty, rinsing dishes and putting them in the dishwasher makes me feel ill because it forces me to look at wet food, and stepping on an unknown item while cleaning has the power to ruin my whole day. (Chores at home feel nearly impossible—something that I don’t think my hard-working immigrant parents would ever understand.)

OCD is one of many facets that make up how my brain works. It’s a part of who I am, just as much as my love for Taylor Swift or Bollywood films.

Thankfully, I’ve been fortunate enough to find friends in college who struggle with the same thoughts and compulsions. When we’re around each other and experience intrusive thoughts, we’ll say them out loud—and we laugh about it. It helps make them feel less scary and overwhelming.

I’ve also learned coping mechanisms through years of therapy that help me better manage my OCD. Every time my heart beats faster after leaving a conversation with my mom, I sit with myself for 20 minutes and remind myself it’s not the end of the world, that I will not die because I didn’t hear what she said the first time. I tell myself that these are minor obstacles in a much bigger, more fulfilling life that I have left to live. This might seem minor, but my therapist has taught me the importance of waiting out my immediate reaction whenever I fall into panicked thinking.

OCD isn’t easy. It sometimes feels like a gaping hole in my life, one that makes me miss out on simple joys because I’d risk the staggered breathing, pounding heartbeats, and hot tears that come afterwards. What I’m learning—what my circumstances have forced me to learn—is that these things don’t change my character. OCD is one of many facets that make up how my brain works. It’s a part of who I am, just as much as my love for Taylor Swift or Bollywood films.

Obsessive-compulsive disorder is so much more than what it’s depicted as in TV and movies. Cleanliness can play a big role in someone’s OCD, but it is harmful and unfair—for all people who suffer from OCD—to only assign them this narrative. Emma Pillsbury’s obsessive-compulsive disorder looks nothing like mine, and by sharing my own experience with OCD, I hope that I can help someone better navigate theirs.