What OCD Is, and What It Isn’t

Note: this is an account of my own experience with mental illness, and is in no way meant to encompass all experiences of mental illness.

During my sophomore year of college, in the waiting area of a therapist’s office, there was a table filled with magazines. The therapist had really good ones, like the New Yorker, and the Atlantic, and that impressed me. I didn’t want to believe that I needed to be there.

A week or so before, I had spent an entire day unable to concentrate through any of my classes because at the beginning of the day I had seen a picture of a scab-covered scalp on Facebook. It was one of those clickbait pictures, that gross scammy stuff that is put there as a means to make your stomach turn. The way that it followed me for the rest of the day, I like to think was an unintentional side effect by whoever or whatever created it.

In my first class of the day, I couldn’t bear to touch my desk with my hands because everything had begun to feel rough and scaly like scabs. In my second class of the day I couldn’t remember what we had talked about in the first class, but I also couldn’t drink out of my water bottle because I vividly remembered the picture, and to drink out of the water bottle felt like letting something rough and scaly touch my tongue.

In my final class of the day, I was fighting back tears. I don’t remember what we talked about, but I remembered the picture. I left campus and went home that night, to my mom’s house. When I walked in the door, I was afraid to touch my dogs or the walls, because they might feel the way I now vividly imagined the scalp in that picture must feel. My mom asked if anything was wrong, and I started to sob. I had briefly imagined how sad I would be when my dog died, and I couldn’t stop crying. Everything felt ugly and far away. I admitted that I needed help because I wasn’t sure what was wrong, but I knew something didn’t feel right.

In my therapist’s office, I was terrified of trying medication. All too recently, I had sat in a similar doctor’s office, in blank-faced tears, awestruck at the way that my skin and my body and the stability of my mind had changed because of a shot I took every three months for birth control. And yet, I only felt truly justified when I mentioned the continuous brown discharge as the thing that made my current birth control unbearable. It didn’t feel right to inflate the changes in my mood to anything but more intense mood swings. I didn’t tell the gynecologist the way that the previous semester had felt like trying to breathe underwater, how I threw away food before I ate it, how each time I took a shower I rushed through the ritual because I was terrified my roommates were talking about me, how much they despised the time I took up in the bathroom.

I couldn’t describe my emotions, to anyone, because all I felt was badness, and I didn’t know why. It was different from feeling numb, or feeling nothing, because I still felt things, viscerally. I felt despair, and frustration, anger, and fear. For weeks, I did nothing but my homework and watch the show Weeds. Every weekend that I could, I left to visit my then-boyfriend in D.C., where he lived with his mom. I didn’t write. I cried almost all the time. I lost almost every friend I had spent my freshman year making.

The first time someone asked me if maybe it was my birth control that was causing some unusual side effects, I lashed out at them. To conflate the emotional turmoil I had gone through, the sheer terror I had felt sitting in my psychology classroom as I felt connections to symptoms of depression and anxiety and OCD and BPD and everything else in the book, with mood swings from birth control felt incredibly offensive. It felt like a denial of the reality of my suffering. Instead of facing the possibility, I accepted a mindset that something was suddenly very wrong with the world, and with me, and there was nothing to be done but survive it.

I didn’t consider changing my birth control until I started getting acne that was serious enough and persisted long enough through countless skin regimens (including my then-boyfriend’s suggestions to stop touching my face all the time) to warrant real suspicion. The acne was like nothing my face had ever presented to me even at the worst of my teenage acne-prone years. I switched birth controls from the shot every three months to a pill I would be responsible for taking every day. The gynecologist recommended it, to her credit, and listened seriously enough to the limited information I shyly gave her to find something that would be more exactly right. We eventually landed on a specific pill that was known to address difficult acne and avoid mood swings. I took home a pack that night.

What might surprise you is that I waited even longer to seek help for my emotional state than I took to seek help for my birth control-induced acne. It’s difficult for me now to separate the appearance and disappearance of the physical and the mental side effects, because they seem so intertwined, and the existence of them so triggered by birth control. I guess I figured the “mood swings” would simply go away as the other symptoms subsided.

They didn’t. Instead, the feelings changed shape. The way I think about it now is that my propensity toward mental illness had always been present beneath the surface of me, and taking the birth control shot had simply opened the floodgates for this illness to manifest itself, fully. As my sophomore year went on, I didn’t feel hopeless and angry and bored anymore, instead I felt hurt and terrified and small. After I had the fateful day’s worth of obsession over a picture I had seen on social media, I found myself outside a therapist’s office, looking through and positively judging his collection of magazines.

Inside his office, he had a sofa, a large armchair, a computer chair where he sat, the stereotypical (possibly required?) framed degrees on the wall, and bookshelves full of books. He was quiet, and gentle, and I liked him. He asked me to call him by his first name. He told me about other students from my school who had come to see him, and explained his own debilitating panic attacks (which he admitted an inability to ever control) that had led him to the field of psychology. I knew that he understood what it felt like to be beyond afraid. He diagnosed me with OCD almost immediately.

Throughout my entire life, my grandfather’s OCD has been a running family joke. It remains in him, quiet, undisturbed, never mentioned openly or seriously. When it is mentioned, it accompanies him like a testament to his quirky nature, manifesting itself in occurrences such as when he got his hip replaced and still made the effort to bend over and pick up crumbs from the kitchen floor. More recently, my mom and her sisters have argued about the percentage of blame that can be settled onto OCD for causing my grandfather’s increased memory loss. I suppose it does makes sense to conflate one flaw in mental stability with another. The only time I’ve ever heard his illness accompanied with raw, true feelings, was when my cousin mentioned his empathy for our grandfather’s experience with it. Crippling, I think he called it, and I knew then that he understood, more, even, than me.

When my therapist diagnosed me with OCD, I felt a rush of relief, and the spontaneous urge to laugh, all at once. I also felt a bit like I was in my psychopathology class again. I decided to take him seriously because he was a doctor recommended by my mom’s psychiatrist, a person whom I had entrusted with her life. I listened and took careful mental notes as my therapist described the telltale signs and symptoms of the disease, and how he had discovered them taking shape in me. The little voice in my head implored me to laugh, as I had always done. I felt both afraid to listen to it and afraid not to listen to it. I wondered if I had ever had an urge to pick up crumbs from the kitchen floor that I had not known about.

The thing about OCD, as it is currently defined by psychologists, is that one of two things must be present for an official diagnosis: obsessions, or compulsions. Obsessions are the things you can’t stop thinking about, like that picture of the scalp that plagued me during my sophomore year. Compulsions are the things you can’t stop doing, like checking constantly to make certain the front door is locked or washing your hands again and again to make certain they are clean. Obsessions and compulsions work well together, often in a sort of one-two punch. If you have an obsessive phobia of germs, you likely will have an accompanying compulsion regarding cleanliness. That’s a pretty common manifestation of OCD, actually, and the one that my grandfather most certainly suffers from.

Here’s the thing: not everyone with OCD has such clearcut symptoms. For weeks after my therapist diagnosed me with it, I wracked my brain every minute hoping to find a compulsion that would solidify his diagnosis and prove that I wasn’t just overreacting. I couldn’t find any, at least not anything clear enough to be attributed to the illness.

My therapist suggested medication, and I shot him down immediately. If there was something I was more afraid of than feeling the sudden symptoms of OCD-led anxiety, it was taking a medication specifically tasked to edit the chemistry of my brain. I was scarred from what a hormone shot had done to steamroll a wave of mental illness, and terrified to press it further. We settled instead on exposure therapy sans medication, to address the immediate phobias pressing my mind.

I don’t know if those who have never tried it know much about exposure therapy, but it goes like this: if you, like me, are afraid of throwing up, really really afraid so that you are kept up all night by the slightest feeling of nausea, can remember every time you’ve seen vomit on the street and what it looked like, and squirm on planes when someone touches anything in the seat-back holder because it might be the airsickness bag, you will begin exposure therapy to curb that fear from taking over your daily life.

First, you simply look at the word “vomit” (or whatever variation of the phrase bothers you most) on paper, and listen to people saying it. Then, you listen to increasingly realistic sound recordings of people throwing up. Then, you begin watching (again, increasingly realistic) videos of people throwing up. At some point, you think of the worst possible scenario that could happen to you, the situation you fear the very most, and that your brain jumps to as often as possible. You write it down, and read it, again and again. For me, that situation involves suddenly getting the stomach flu on a long airplane flight. Eventually, you train your brain to get bored of the thought of throwing up, so that the fear no longer consistently plagues you; instead, when you think of vomiting, it lasts seconds, and your brain drops it, bored with its own inability to induce panic in you. When you flood your consciousness with enough images of something for long enough, you can show yourself that simple thoughts cannot harm you. Exposure therapy is a long, arduous process designed to get you to some semblance of normal. To think about throwing up only as much as the average, mentally healthy person thinks about it.

I dreaded these sessions of exposure therapy. Each time my therapist and I watched Youtube videos of children throwing up on amusement park rides or people throwing up from nervousness onstage, the image stayed with me for hours after the session ended. I never did my homework of watching more videos on my own time. I wondered if the process, designed to dissipate suffering, would ever get easier.

It didn’t. In fact, the way that I remember it, something else happened instead. It was the summer after sophomore year had ended, and I had begun entering a period of time with some semblance of normalcy. I was preparing to go abroad the next year, and the sessions with my therapist stopped involving such intensive exposure therapy, slowly then all at once. I started questioning my right to be there, wondering if the fact that I was feeling better meant that I had never truly deserved the diagnosis in the first place. I stopped going to therapy when I felt more self-conscious describing the success of my daily life than I felt anxiety I could relay the story of. My therapist didn’t push me to stay or to go, he simply referenced the tools we had built for me, together, for the next time I found a picture my brain wouldn’t let go of.

As seemingly sudden as the disappearance of my illness was, the return was even less expected. The thing about my OCD and my anxiety is that they come back in waves, and the wave where I typically recognize them is the one where out of nowhere I start panicking in the middle of a restaurant because I think I might have the stomach flu. The first time I knew the anxiety was back for good was in my senior year of college. It was when the fear felt bigger than the tools my therapist had given me to fight it. I don’t know what exactly marked my change of heart, but this was the year I decided to try out medication.

I can describe the feeling of my anxiety and my OCD pretty well, but what I don’t know how to describe is the relief and the normalcy I feel when they are gone. Yes, it’s easier to pinpoint when I’m feeling normal than when I start feeling not (normal). The slope of slipping into illness again is uphill, and I’m slow to trudge toward realization. The slope of slipping into normalcy is like jumping off a cliff. And yet, I don’t know how to relay that feeling of normalcy to anyone who hasn’t lived outside of it. Here: it feels exactly the way lots of people feel every day. It’s minor annoyances, it’s not crying loudly in the shower, it’s going outside and simply enjoying the sunshine for what it is. It is intoxicating, and it makes me forget.

And so the cycle of trudging up slopes and off cliffs, begins itself again.

I went to my mom’s psychiatrist to get prescribed medication because I trusted him the way she trusted him. We talked at length, he affirmed my diagnoses, and we began first with a carefully selected 5 milligrams of Lexapro every day to avoid any accidental side effects — most notably the nausea. (I still take it right before bedtime even though I’ve never once felt nauseous from it, because this is what the doctor suggested to avoid even the slightest chance I feel it.)

Here’s what (for me) being on Lexapro feels like: nothing. It feels like watching movies where actors might pretend to throw up without nervousness, and getting drunk without fear, and reading books and graduating college and not wanting to scrub a bathroom toilet before I use it because someone threw up in it three weeks ago.

Here’s what else it feels like: feeling so normal that you forget to pack your pills with you for a 10-day long trip home and that trip is soured by anxiety that springs itself upon you as if it never left. Forgetting to take your medication for a few days, and then crying really hard to your significant other because you simply can’t find the words to describe why you’re upset but you know you’re not okay and you know that you aren’t doing it on purpose. Getting angry that you have to take medication at all, that you have to think about taking something regularly or your brain will attack you with panic.

Here’s what mental illness feels like: being sick.

I don’t know how to end this piece, so I’ll just say this: I’ve been very fortunate to have a strong support system through every step of my journey with mental illness. For those of you who know me, it isn’t something I talk about very often, if I can help it. I hope I’ve provided some insight, and for those of you who have been through it, something relatable.