There's a rugged road

My OCD and Me™

On December 15, I was diagnosed with OCD.

This wasn’t exactly new information. I had known for a while, or at least I had an idea.

I have always felt like I’ve been able to understand myself pretty confidently—even if that understanding is warped through the lens of my own vanity. Or self-obsession. But who isn’t thinking about themselves all the time? My entire worldview exists through the lens of my own experience, just like everyone else’s. Everything is colored by who I am. That’s the only way anyone can see. So when something new appeared in the form of a potential diagnosis, that worldview shifted. The lens I had pressed to my eyes cracked down the middle. Shards of glass through my eyes and my sense of self. Then, after the diagnosis, a new lens appeared in front of me. Thicker. More distorted.

I hesitate to call it a glasses prescription, but the metaphor works, and I used to work in customer service for a large online glasses retailer and that girl still lives inside of me. I had been wearing the same glasses for 29 years and suddenly they didn’t work anymore. Actually, that’s not quite accurate—it was more like the glasses had been surgically attached to my head. I had grown so used to seeing through them that there was no world in which I could imagine taking them off.

And then the lens cracked. I couldn’t walk around with shards of glass in my eye. I had no choice but to take them off, and with them came my entire sense of self.

You know, I hesitate to tell a success story of The Algorithm, but none of this would have happened without it. Whatever. I had lived with the vague idea that I might have OCD after conversations with friends over the last few years, but last year, when the disorder started gaining speed in my mind, my phone somehow knew. It started feeding me videos about OCD. It was a lot of, “Wait. That’s not normal? I feel that way. I thought that was just anxiety.” Over and over again.

A few years ago, a few friends individually revealed to me that they had OCD and gently suggested that I might also have it. I didn’t think much of it. I didn’t even know what OCD was, really. In my mind it was the Locking Doors Disease. Checking if the stove is off, checking if the door is locked, counting tiles on the floor. Not the I’m thinking about this so intensely and for so long that I can’t focus on anything else in my life and it’s slowly eating the usable parts of my brain disease. Turns out, however, it can look like locking doors, but it can also look like thinking yourself in spirals so severe you start to burrow into the ground.

Plus, I don’t necessarily believe in diagnosing yourself. There’s plenty of discourse about that online and none of it is interesting to me, so I’m not going to get into that here. But I do believe that if the shoe fits, it’s probably your goddamn shoe. So I started reading and, unfortunately (and fortunately) the OCD shoe fit me perfectly. And my feet are pretty big so that was a little shocking.

I didn’t do anything with it for a while, though, not until it started getting bad. I just kind of lived with it, which is mostly to say that I pushed it aside until it got so bad that ignoring it was no longer possible. This is apparently a common strategy among people with OCD, I found out later on. But then the algorithm videos started getting more specific: DO YOU HAVE TO PEE 13 TIMES BEFORE YOU GO TO BED. DO YOU THINK YOUR FAMILY WILL DIE IF YOU THINK ABOUT THEM DYING. DO YOU REPLAY EVERY CONVERSATION YOU’VE EVER HAD. DO YOU ANALYZE YOUR RELATIONSHIPS UNTIL YOU CAN’T THINK ABOUT ANYTHING ELSE. I started saving them, my algorithm learned that I was saving them, and then it was feeding it to me nonstop.

I am, categorically, a mentally ill person. I don’t know how to talk about myself without that being part of the story. I’ve been sick for a long time and it’s just a part of who I am. In middle school I had a Tumblr where I reblogged black-and-white photos of girls with eating disorders and captions about wanting to disappear (and also gifs of Glee characters. I was a well-rounded teenager). In eighth grade, someone found my blog and called my school and the guidance counselor pulled me out of class and asked me to explain myself in a tone that suggested I had committed a crime, and I felt like I did. During the next period I logged into Tumblr on my friend’s iPod Touch and deleted the entire blog. Years of sadness gone in thirty seconds because I didn’t want anyone to know I was actually struggling, as if deleting the evidence would make me not sick.

It didn’t work. I’ve been this way for a long time. The depression hung around. A reasonable amount of depression, if there is such a thing, and then the panic attacks started my senior year of college. I was sitting in my living room in my house on campus the week before I started classes when suddenly I thought I was having a heart attack. My hands went numb and my chest tightened and my brain started screaming “you are dying” at me. I called my dad and told him that I thought I needed to go to the hospital. He told me to go walk on a treadmill at the gym, so I did, and eventually I came down from it. I didn’t know that a panic attack could feel physically debilitating like that until it happened a few more times and I could put a name to it.

Skipping a few chapters — what I didn’t realize until several years later is that my brain had already been doing OCD things long before the panic attacks. I thought everyone replayed conversations in their head like I did. I thought everyone analyzed the exact tone of someone’s voice for hidden meaning, I thought everyone woke up at 3am convinced they had ruined their entire life because of something they said on Tuesday. I thought everyone was thinking about the small mistakes I made all of the time. I thought everyone felt like all of their friends secretly hate them and regularly gather to talk about how much they didn’t want them around.

Apparently that is not the case!

Relationship OCD is the loudest one for me. This is the subtype where your brain treats relationships like crime scenes. You replay every interaction, analyze every word, run simulations. A good example: I’m sitting at dinner with someone I care about. We have a perfectly normal conversation, I make a joke, they laugh. Ten minutes later they say something slightly quieter than usual and my brain decides the entire evening has gone wrong. Did I offend them? Was the joke mean? Did they laugh politely? Do they secretly think I’m annoying? Have they always thought I’m annoying? By the time dinner ends I have run forty-seven separate theories about why they secretly dislike me and have already visualized them going home and texting all of my other friends about how awful I am. They hug me goodbye and say “see you later” and my brain immediately says: “that sounded weird. Different than normal. Something is wrong!”

Or I’m lying in bed at night when my brain suddenly produces the thought: What if you don’t actually love the people you love? Immediately I panic. Of course I love them, but what if I’m wrong? What if I’m lying to myself, what if I’m secretly a bad person and everyone eventually figures it out? Then that thought repeats. It spins and spins and spins and I spin out with it.

OCD is not really about the thoughts — everyone has weird thoughts — but OCD is about the loop. My brain demands certainty, but certainty does not exist, so my brain keeps digging and digging, looking for that certainty, until my fingers start bleeding.

The main treatment for OCD is something called Exposure and Response Prevention (ERP). The idea is simple: you still have the bad thoughts, but you stop trying to fix the bad thoughts. You just let them exist. You let your brain scream and you do nothing about it. And then, eventually, your brain makes new pathways for the thoughts to take.

In practice, it is both more structured and more ridiculous than that.

My therapist and I made what’s called a hierarchy, which is a list of the things that make my brain freak out, ranked from mildly uncomfortable to “absolutely not under any circumstances.” At the bottom are things like sending a text and not rereading it ten times. In the middle are things like letting someone misunderstand me without immediately clarifying. Near the top are the nuclear options, the thoughts my brain treats like emergencies.

Then we turn those things into exposures.

An exposure is basically inviting the thought in on purpose. If my brain is afraid that a relationship will implode because I said the wrong thing, the exposure might be resisting the urge to analyze a conversation afterward, or sending a message and not checking it again, or sitting with the possibility that someone misunderstood me and not trying to fix it.

Then, every exposure comes with a response message, which is therapy-speak for the sentence you tell your brain when it starts screaming. Mine usually sound something like: maybe that’s true, maybe it isn’t. Or maybe I ruined everything. Or my personal favorite: cool, guess we’ll find out.

This is not satisfying for the brain. The brain wants certainty and final answer and a signed affidavit. ERP refuses to provide that. Instead, you sit there and let the uncertainty exist. Then the anxiety spikes. Your body, as usual, begins to think something terrible is happening. And then — slowly, annoyingly — the anxiety burns itself out.

The first time I did an exposure, it felt like standing in the middle of a highway. Every instinct in my body said solve this now. Instead my therapist told me to try saying “maybe.” Maybe that bad thing will happen. Maybe I misunderstood. Maybe I’m wrong. Maybe the thought means nothing at all. Then I’m supposed sit there. Eventually, the brain gets bored. It moves on. And then you do it again, and again, and again. I am in the “and again” phase right now and I will be for a long time.

It’s only been three months—not a long time when you have spent almost thirty years thinking the same way. But occasionally, I’ve been noticing small shifts. A thought appears and I don’t chase it, a conversation ends and I don’t immediately replay it. A text I’ve sent goes unanswered for an hour and the world does not collapse. I am sitting in the uncertainty and the fear and the discomfort.

It’s still pretty bad, but it’s getting better (so painfully) slowly. Tonight, a couple hours before sitting down to write this, one of my friends unintentionally triggered me. She would have no idea that something she said was a deeply specific trigger I have. Instead of allowing myself to spiral about it, I did my therapy talk with myself. And then I sat down to write this.

I am still scared, kind of all of the time, and I am definitely still figuring this out. I feel like I’ve gotten hit by an emotional truck most days,. This is not a success story by any means, at least not yet. But I do feel hopeful most of the time, too, which is a pretty foreign feeling to me. The lens is still so cracked, but every once in a while the light comes through it in a way I’ve never seen before and I start to believe that maybe, slowly, I can learn how to see through it.

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Phew. Y’all. I haven’t posted anything on here in 2 months because I have been going through it. This treatment is tough and my body feels like it’s on fire most of the time. But I know it’s worth it and I will look back on this in a year or whenever and I’ll be glad I did it. Statistically, ERP works for most people living with OCD. It’s not a cure but it’s a very effective tool. If you are reading this and living with OCD, I’d love to know your story. Therapy that works for you, any books/movies/media you’ve consumed about it. I want it all. Please share!

I hope y’all have been well. Tell me something good about your lives in the comments if you’d like. Here’s what I’ve been listening to lately. Talk soon!