What It’s Like to Live with an OCD Monster

“Prepping for surgery?” a friend jokes in our dorm bathroom as I wash my hands vigorously, creating a soapy lather halfway up my forearms. I nervously laugh and blush, devising a lie about a pen leaking all over me. My friend nods, rolls her eyes and exits the bathroom. I ache to scream, but instead I scrub my hands and forearms raw — not just once, but again and again and again, frantic to finish before someone else calls me “crazy” with just a glance.  

I am not at war with ink, but something invisible from the sink edge I brushed against; something bacterial, viral, fungal — anything microbial that could have leapt onto my skin and bore its way into my pores. I breathe shallowly until I am convinced the infectious agents have spiraled down the drain. I inspect my hands; they are pink like salmon. I know that they will crack and bleed later.

Getting to Know My OCD Monster

Before I was diagnosed with obsessive-compulsive disorder (OCD), I regularly engaged in exhaustive cleaning rituals, mostly of my hands, but also of unsuspecting body parts — elbows, knees, heels —anything that could have touched a soiled surface. Every possible exposure spread across my body like an intricate and sticky web of ivy, the world around me transforming into the blurry backdrop of a photograph. Anxiety was the only thing in focus, crisp and vibrant, my “what ifs?” drowning out the voices of others.  

I sought help when I could no longer rationalize these rituals. In the spring of my freshman year of college, I met with a psychiatrist who diagnosed me with OCD. With his help, I examined my thought patterns and behaviors, as if through a magnifying lens, learning that my OCD was a crafty monster who grew stronger when I fed it with compulsions. Each action I took to lessen my anxiety enhanced it, made my fears seem reasonable, sharpening my monster’s claws so it could dig deeper into my brain. 

My psychiatrist encouraged me to sit with moments of distress; to feel them instead of running from them. And to notice how resisting my urge to fight a potential contagion would decrease my heartbeat gradually and lighten the heaviness in my body.  

My first months of therapy and medication were comforting. I could identify and understand my illness. I could see how my rituals were both logical and illogical: logical because my brain had convinced me such measures would protect me; and illogical because they were unnecessary responses to what I feared, for I was seeking safety when I was already safe. These realizations did not heal me, but they were a map to guide me and help me find pathways for coping.

Strengthening My Resolve with Exposure

Some days I felt calm; on others, though, I merely existed. I became angry at my OCD monster, furious for what it had stolen from me: hours, days, months, years. Not to mention intimate connection with others.

My anger evolved into defiance. One summer, I went backpacking through the Washington wilderness for five weeks, drinking water from glacial rivers, going days without showering, sitting naked in a sweat lodge with my unbathed, sweaty peers. I was surrounded by contaminants, but I survived — and my OCD monster shrank in size.

The following years, I traveled through Europe and South America on tight budgets, staying in sparse hostels, using claustrophobic train bathrooms, discarding used toilet paper in wastebaskets with others’ used toilet paper. Again, contaminants were everywhere. And again, I survived and strengthened my resolve to silence my OCD monster.

But as I began to gain control, my OCD monster fought back, unearthing new anxiety rabbit holes. I became terrified to drive as I might hit someone and not realize it; each bump in the road became a possible body. I worried I would burn down my apartment by not turning off the stove or lights, even after I had checked them multiple times. Then came the intrusive thoughts, which made me doubt my own goodness and morality. It is not just the compulsions of OCD that are debilitating, but the loss of trust in oneself.

Looking For Compassion and Understanding

Throughout the years of wrestling with my OCD monster, of fighting to see myself as separate from it, people in my life tethered me to it, pointing their fingers like bullies on a playground. They have:

• Told my friends in the dorm that I was “odd and uptight,” and the solution was for me to “get laid.” 
• Berated me when I spent too much time in a restroom, embarrassing them in front of strangers who were waiting in line.
• Questioned my need for medication and lectured me on why going to therapy was a self-absorbed practice.
• Accused me of infecting them with OCD as if it was an infectious pathogen.
• Yelled at me in frustration many times for taking “ridiculous” measures to ensure my or others’ safety.

I know my behaviors can be aggravating and difficult to understand. I do not expect the world to contort itself to meet my every need, but such moments of coldness and hostility have haunted me. What if one of these people responded with empathy, asking if I were okay, or approached me with patience and respect, listening before judging?  

Interactions like these, and my desire to hide my OCD, have been isolating. Alienating. Frightening. Life is lonely living with an OCD monster, but it also tests your strength.

After 22 years of “what ifs?” and snide remarks, I have collected scars; some smooth, some ragged, some too tender to touch. But they are evidence of my resilience. I share them with those I trust, with those who look at them and see me — not the odd girl or the monster — a kaleidoscope of a human being.
 

Erica Halk has been living with OCD and depression for more than 22 years. To cope, she writes, reads, follows animal influencers on Instagram (mostly beagles) and marathons “Golden Girls” reruns.