Pinterest & OCD

Image Credit: charlesdeluvio

One of the simple pleasures of my 30s has been taking lavender scented Epsom salt baths while listening to jazz and scrolling Pinterest. Before I started taking medication, I relied heavily on the ritual to ease my chronic pain and anxiety. During the Covid-19 pandemic, the baths were a soothing balm for loneliness and existential dread. Ironically, though, my go-to self-care move became the garden in which my OCD self-diagnosis took root.

I’ve enjoyed Pinterest since I got my first smartphone in 2012, often mining the app for fashion inspiration, health and beauty tips, and seasonal wallpapers for my phone. But as I soaked and scrolled, Mother Algorithm slowly began guiding me from vegetarian soup recipes, general mental health content, and pictures of autumnal scenes to graphics explaining and exploring the vast world of OCD — the condition’s symptoms, treatments, and various forms.

I learned that OCD is more than excessive cleanliness and the fear of contamination. I learned that OCD is more than counting. I learned that compulsions can be mental. I learned that intrusive thoughts of violent and sexual images is a common OCD symptom. I learned that OCD can be treated, but as of yet, it can’t be cured. I learned more about OCD from Pinterest than I’d learned about it from any other source, and in the process, I learned about myself. I started remembering my childhood through the lens of an OCD-informed adult, and I grew more certain of my self-diagnosis with each revisited memory.

I can’t recall how old I was when I found myself being plagued by “bad thoughts.” I remember shaking my head in a silent “no” when they intruded, certain they’d come to pass if I didn’t. I remember my therapy-averse parents offering to let me “talk to someone” about the “bad thoughts” I’d felt compelled to confess to them, and I remember turning them down. I can’t recall when I started saying specific prayers before performing certain tasks — my young mind sure something terrible would happen otherwise — but I still occasionally catch myself mid-prayer, mid-compulsion.

I was seven years old when I stopped sharing a room with my sister and started experiencing a type of parasomnia. I’d wake up in the middle of the night paralyzed by fear and the feeling that I wasn’t alone. Convinced a demon was watching me, I’d mentally repeat the following phrase: “I rebuke you in the name of Jesus” until I fell back to sleep. By 12 years old, I’d developed two BFRBs (body-focused repetitive behaviors). In an effort to self-soothe, I’d rub and pluck my eyebrows with my fingertips and fingernails until bald spots formed. I’d bite the inside of my cheeks, turning the soft tissue bumpy and raw. I still deal with these conditions — all of which often coexist with OCD — but managing them is no longer a daily struggle.

I was 34 before I received an OCD diagnosis. In a small exam room of a rural clinic, my doctor confirmed what I’d suspected for years: “You have OCD,” she said. I’d been listing my symptoms — rechecking paperwork eight times and still feeling the need to check it again, taking photos of my stove visibly turned off before leaving the house — when she interrupted me with her diagnosis. Having experienced medical gaslighting in the past, her swift validation left me momentarily speechless. I was prepared to keep listing symptoms, but I didn’t need to. She’d heard what she needed to hear, and so had I.

As a TV-loving child of the 1990s, it’s not terribly surprising that it took me 30 years to suspect I might have OCD. Historically, pop culture hasn’t done OCD representation very well. Mostly, OCD has been represented — though rarely named — through characters who were incredibly clean and organized, like Monica on Friends.

TV and film representation of OCD and those who live with it has slowly begun to better reflect reality over the years, with shows like Girls and Turtles All the Way Down, and that’s certainly worth celebrating. Even so, outside of Pinterest, the most informative and validating piece of media I’ve consumed about OCD is YouTuber Rowan Ellis’s video essay: “The Sanitized Lie of OCD Representation.” In that one video, Ellis does more for OCD representation and education than any TV show or movie I’ve watched that’s attempted to engage with the condition.

Hollywood’s failings regarding OCD representation are, in a way, understandable. Talking and learning about mental health hasn’t been popularized in mainstream media — or most social circles — for very long. It wasn’t until 2015, when I started being assigned mental health articles, that I knew there was a clinical term for the intense nervousness I felt when starting a new job or attending college parties: social anxiety. It was around this time when I discovered depression can look like laziness, anxiety can cause irritability, and difficulty concentrating is a symptom of PTSD. I learned so much by writing about mental health, and yet, OCD was never among the conditions I was asked to report on.

I didn’t think much of it at the time, because just writing about depression, anxiety, and PTSD — often incorporating my own experiences into my pieces — felt pretty revolutionary. As an American woman, I grew up very aware of my country’s penchant for stripping autonomy from women seen as mentally unwell. Forcing institutionalization and sterilization on people — often women and girls — deemed “feeble-minded” or “deviant” hasn’t been uncommon in the U.S. for very long. Forced sterilizations were still happening in the United States in the 1970s.

Much more recently — in the late 2010s and early 2020s — Americans discovered how money, power, and fame couldn’t protect Britney Spears or Amanda Bynes from enduring years-long conservatorships. When I was struggling with suicidal ideation in my early 30s, I didn’t tell a soul until after the thoughts had long passed, because my fear of being involuntarily institutionalized — of losing my agency — outweighed any fear I had of dying by my own hands. Although it may have been only subconsciously, I suspect fear of institutionalization is at least one of the reasons I turned down the opportunity to “talk to someone” as a child.

Perhaps unsurprisingly, the fear of wrongful imprisonment is one of the OCD obsessions I’ve dealt with as an adult. I know it’s illogical — I’ve never committed a crime, and I never intend to. I’m a law-abiding taxpayer. I’ve never even shoplifted. Still, I’ve always worried about getting in trouble; I’ve always worried about losing my agency. For most of my childhood, this looked like the fear of eternal damnation; for a portion of my adulthood, this has looked like the fear of wrongful imprisonment. While the most distressing manifestations of my childhood OCD were inspired by religion, as an adult, they’ve been inspired by law.

Sadly, being an informed American means never fully trusting your government, so fear of wrongful conviction and wrongful imprisonment isn’t totally unreasonable. America loves putting people — increasingly women, and especially women of color — in prison. As of this writing, there are states — including my home state of Missouri — where physicians can be prosecuted for providing abortions. There are states where parents can be prosecuted for providing their children with gender affirming healthcare. In my home state, drivers can be jailed for up to a year for littering. In 2019, a Florida man was arrested for displaying an “I Eat Ass” bumper sticker on his truck. Historically, Americans have been arrested for everything from participating in suffrage protests to cross-dressing.

Indeed, it’s not surprising that my OCD obsession with wrongful conviction and imprisonment seems completely understandable to most of the loved ones I choose to share it with. Once, between puffs of a legally obtained hemp joint, my cousin replied to my revelation: “You’re an American. It’s not crazy to worry about that.”

What I suspect my friends and family might find “crazy” is how this particular obsession has impacted my daily life in the past. Before I started taking medication, I’d stop watching shows if a character was required to appear in court or spend a night in jail. I was afraid to check my mail, worried I’d see a subpoena with my name on it when I opened the mailbox. I’d hear a police siren in the distance and fear the cops were coming to take me away. More than once, I had to reassure myself that I didn’t block out committing a hit and run during my commute.

I’m thankful medication has made my obsession with wrongful conviction and imprisonment smaller and weaker than it used to be. I’m hopeful it will eventually dissolve entirely — like so many of my religion-inspired obsessions and compulsions did as I exited my fundamentalist Christian childhood — but only time will tell.

Only further research will tell why OCD exists and how it develops. Currently, it seems OCD requires the perfect cocktail of genetics and environmental factors to make itself known. While studies have found that OCD runs in families, they’ve also found possessing the genetics for OCD doesn’t necessarily mean a person will develop the condition. In fact, some research suggests experiencing severe stresses, such as abuse, can cause OCD to form in individuals who — despite their genetic predisposition to the disorder — might never have dealt with OCD if they hadn’t been abused. Essentially, OCD can lie dormant in a person’s cells if they never experience the environmental triggers required to activate it.

I’ve been abused. I also have good reason to believe OCD runs in my family. My genetics, my trauma, and my diagnosis are inextricably linked. It’s not my fault I am the way I am, and that’s oddly comforting. I’m not a bad person when I have “bad thoughts” I can’t control. I’m not weak when I have to fight the urge to perform compulsions. I’m not crazy when I have to reassure myself that I didn’t do something wrong. What I am is a person with OCD; and that knowledge has, in a way, set me free