It’s obvious in retrospect. Once, when I was seven, my brother said a bottle of apple juice in our refrigerator “tasted like poison”, and I didn’t drink apple juice for years.
“Mom,” I said, “Is it really poison?” When she said no, I clung to the words like a shield.
When I was thirteen, a series of memories I hadn’t thought about in years returned to me: my neighborhood friend and I, a girl, kissing. Not once or twice, but often.
My heart fluttered and clenched at the same time. Oh my gosh, I thought, am I gay? This must mean I’m gay. I didn’t know any gay people. The messaging I got from my conservative community (and society at large, really) was overt: gay people, if they existed at all, were incorrect and lived hard lives. I could not be gay.
Yet I couldn’t get rid of the memories or the distress they brought. I pictured it over and over and over. The more I thought about it, the more details came back to me and sent me into a new surge of terror. The detail I found most distressing was that when my friend and I kissed, I almost always played “the boy”.
That must mean something, I thought. I must be the gay one. She was just pretending to kiss a boy. For the better part of a decade, my life became a cycle of trying to “solve” my sexuality like a math equation, thinking I’d solved it, and then starting over.
The thing I was certain would bring me certainty was imagining scenarios in which I kissed someone, a boy or girl, and then “checking” my body for arousal. Would I like that? I’d ask myself. Am I turned on? I could not comprehend what attraction or desire was supposed to feel like.
That in itself felt like an answer: don’t straight people just know these things?
I observed boys’ portrayal of attraction and assessed whether I felt similarly. If I were attracted to girls, I thought, I’d experience it like boys did. Am I attracted to girls’ hair? Their butts? I asked myself, trying to call up the things I heard boys whisper to each other during class or at lunch.
I questioned whether I had romantic or sexual feelings for my friends. I “tested” myself further by imagining girls’ bodies or looking at them on T.V. Just about everything became evidence to either support or deny my working hypothesis—and biggest fear—that I was gay.
The “poisonous” apple juice was not the last time I obsessed over my health and safety. By the time I was seventeen, I’d gone to the hospital or doctor multiple times because of a tightness in my chest and feeling short of breath. The last time I went, after more tests had come back normal, my primary care doctor suggested I may want to look into therapy. I scoffed.
Years later, I saw that “major depression” and “generalized anxiety” were added to my medical records. Footnote: on average, it takes OCD sufferers ~17 years to receive accurate diagnosis and treatment.
I learned what obsessive-compulsive disorder is by accident. I was 20 and newly motherless. Grief had seeped into all my cracks and widened them to uncrossable chasms. All the mental health challenges I’d faced before were still there, and they were worse.
For the first time in my life, I had panic attacks. Every day. I’d get home from work and wonder how I was going to do it again the next day. Being a walking, breathing human being felt like an insurmountable task.
I was desperate. As a late-Gen Zer does, I turned to Instagram for answers. I searched “anxiety”, the only word I knew of that might possibly encapsulate what I was experiencing. I found the educational accounts of therapists as well as everyday people chronicling their mental health journeys. As I scrolled through them, I came across content about OCD.
I had no idea anxiety and OCD were related. The only context I had for the condition was that it was about “liking things a certain way”—clean, orderly. Until I saw this phrase: sexual orientation OCD. Seeing these words, and the description that followed, was like stumbling upon myself in a dictionary. I couldn’t believe there was language to describe this thing that had plagued me throughout adolescence. This fear that had taken on a life of its own.
I learned about other themes of OCD, too. Health/illness OCD (check) and sensorimotor OCD (check). I learned that compulsions can be mental. That reassurance-seeking is one of the most common ones. I flashed back to the dozens of times I’d asked my mother: “Am I going to be okay?” or some version of “Is it really poison?”
I wouldn’t get diagnosed for another year and a half. Though I found solace in the Instagram-induced knowledge that I wasn’t alone in my experiences, I still didn’t quite know how to talk about them. Still felt shame about my uncertain sexuality and the possibility of queerness.
Plus, grief had decimated me, left me speechless. I, a writer, felt like words had been vacuumed from my body. When I am diagnosed, I find even more comfort in an official label to cling to, a nomenclature that says here’s something that explains your pain. Here are words where you have none.
I was going to school in Denver, an exceedingly more progressive city than the small town I grew up in. I had a queer roommate who had queer friends, one of which was a woman who often flirted with me. The more representation I found (both in my own life and the increasingly more inclusive media landscape), the less invested I felt in my sexuality. Maybe, I thought. Maybe I am gay.
I couldn’t believe that these thoughts were no longer eliciting the heart-flutter-and-clench response. That I wasn’t spiraling down the hole of I need to figure this out right now.
About a year after my diagnosis, one of the Instagram accounts I first found when searching for answers about my brain posted that they were looking for a copywriter. Though I was still in college and didn’t have professional writing samples to show, I applied anyway. I included a link to my blog, on which I chronicled much of my soiree with mental illness.
I owed my knowledge of OCD to social media, and I figured it’d be fulfilling to use something I’m good at (writing) to give other people the knowledge that gave me so much relief. I was surprised and ecstatic when I got the job.
I learned the ins and outs of OCD and its go-to treatment, exposure and response-prevention (ERP). I realized I’d practiced its techniques, unknowingly, on my own. The way I stopped reacting to my fears of queerness. And other ways I’d pushed myself to do things I was afraid of—when I was having daily panic attacks, for example, I was terrified to even leave the house. I always did, though.
As I wrote blog posts and infographics to explain the world of OCD and OCD treatment, I gained more insight into my own experience. I was in traditional talk therapy, but I wasn’t addressing my OCD in treatment.
The truth is that it’s taken me years to get one-on-one ERP therapy. It’s not for lack of trying. Since my diagnosis in 2020, I’ve encountered the typical barriers to therapy: being underinsured, having a limited number of ERP-practicing therapists in my area, long waitlists for those who did practice ERP, and meeting with therapists I didn’t click with.
The barriers I experienced are part of my passion for the work we do at NOCD. I am lucky in that I continue to work in the community and have endless access to education, tools, and the wisdom of clinicians. With medication, practicing resisting compulsions by myself, and talk therapy to address other mental health concerns, I have been able to thrive.
I am now finally seeing an ERP-specializing therapist, and I can’t wait to see how having this support helps me reach a new level of mental wellness.
If you have sexual orientation OCD, this part of my story might trigger you. I am queer. I’m engaged to a woman. The thing I once feared is true. It’s important to mention, though, because this part of sexual orientation OCD is often misunderstood.
I know this because I wrote an article for the International OCD Foundation years ago about bisexuality, SO-OCD, and internalized homophobia (I no longer identify as bisexual, so I’m not going to link the article here). Since the publication of that article, I’ve received dozens of messages and comments to the tune of:
Wait, I thought OCD always goes against your values and therefore isn’t true???
I thought SO-OCD was about being a sexual orientation that you aren’t?
You had SO-OCD and are actually gay?? What if that means I’m gay???
In my case, my fear of queerness had less to do with OCD and more to do with internalized homophobia. OCD, as is its nature, did go against my values and did make me engage in compulsions, but those values were ill-informed. SO-OCD plagues people of all sexual orientations and can look a myriad of ways.
I live a beautiful, warm life because I know who I am and because OCD does not stand in my way. I still have intrusive thoughts (not about my sexuality—for me, OCD finds a new theme to latch onto when I get bored of one). I am not debilitated by them, though. I am not perfect at resisting compulsions, but I’m pretty good. I’m pretty good.
The teenage version of me couldn’t imagine that.
Elle Warren is currently writing a memoir about the power and process of uncovering language for OCD, queerness, grief, and other parts of being human amid a culture of silence. In 2023, her debut collection of poems, Come Back For a Little Bit, was published with Game Over Books. Follow her at @ellewarrenwrites on Instagram for memoir excerpts and poems.