The second of two posts about OCD.
I took the easy way out when I posted last night—I was tired, emotionally exhausted, and it’s much easier to talk about things that affected you as a preteen than to delve into the already-messy adolescence and adulthood. But this morning, someone reached out to me to say thank you for posting, and that after reading that post and finally taking the medication they’d been resistant to take, they slept well for the first time in years. So maybe I owe it to myself to go a little deeper, even if I’m uncomfortable sharing all the details.
Obsessive-compulsive disorder has two parts: there are the obsessions, the unwanted, uncontrollable, relentless thoughts that won’t stop circling in your mind to the point that you spend hours a day engaging with them, and then there are the compulsions, things you to try to counter or prevent the thoughts, or to reassure yourself. Obsessions tend to fall into rough categories, all based on fear: harm, sexual taboos, losing control, religious obsessions, and contamination (à la Monk). Compulsions can be invisible (mental checking, scanning of the body, re-visiting situations over and over again to try and get to the truth of them) as well as more overt: checking the oven, repeating gestures, praying, confessing or telling, washing and cleaning.
They also often change over time, as you age and your interests and intrigues change. As an eleven-year-old, my fears were mostly about harming others, with a healthy dose of losing control. I would picture horrific scenes over and over again to “check” that I didn’t really want them to happen. It was an obsession with finding the “truth” of the thing. But once I’d convinced myself that I wasn’t really going to, say, attack my parents in my sleep, then another, slightly different thought would pop up in its place. “Oh yeah? Well how about this one?” It was exhausting.
OCD is a black-and-white cookie of a disease. It tells your brain that things are, or they aren’t. There’s no space for the in-between, for murkiness, because you need clarity, certainty, and interstitiality can’t be controlled. People with OCD are constantly, desperately trying to impose control on the maelstrom of thoughts and fears that overtake our minds and even our bodies (full-blown anxiety attacks are not uncommon).
I got older, the things I obsessed about changed. For a while, it seemed that the monsters had disappeared (it is common for OCD symptoms to come and go, and they often manifest in times of particular stress). But at sixteen, when I was studying for my GCSE exams, they hit hard, and became closer to something I now know as Pure O. I became terrified that I might be deviant in some way (because how would you know? how can you tell that you aren’t one of the people that does bad things?). A thought or image would wedge itself into my head and I’d mentally went through every memory for “proof” that I was or wasn’t whatever it suggested, all the time my arms and face prickling from anxiety. I felt that I couldn’t be trusted around my friends, around anyone, so I hid from them. The monsters loved that—proof positive of my deviancy. There was a phenomenal article on Pure O in the Guardian five years ago, and while I’m not emotionally able to go as deep into this as its pseudonymous author, her experiences resonate with me. In this form, OCD becomes a sleuthing exercise, a desperate attempt to find certainty. As the author of that Guardian piece writes:
I didn’t understand that I had the “doubting disease”, as OCD is otherwise known. I didn’t know that it was the uncertainty itself that was frightening, the possibility that I might never know my “true identity”. Neither did I understand that my soul-searching behaviour was actually making my thoughts worse. I was wholly ignorant of the bitter irony that in constantly seeking certainty, pure O-ers render themselves more uncertain.
Exams over, another brief respite. I wrote a short story about a man, Arrant, who crept in through the the protagonist’s bedroom window at night and took over her mind. It was published. There was relative calm. Then came eighteen and A-levels and another bout of Pure O. I remember “studying” at my boyfriend’s house, but all I was doing was ruminating and ruminating and imagining and checking memories over and over again. This time, the “subject matter” was fairly innocuous—the monsters were fixating on the idea that maybe I didn’t love that boyfriend after all. But the thoughts, the methods of investigation, the quest for certainty, the panic attacks when there was no way to be sure—these were all the same. Eventually, I stood up and drove to the school where my mum taught, my entire body on fire from anxiety, tears streaming down my face. I had to say something out loud, I had to confess. That provided momentary respite.
It was seven years later that I was finally diagnosed. I’d just moved to Iowa City to do an MFA, I didn’t know anyone, I was living alone for the first time in my life, and a variety of disturbing, dark images started to pop into my head. I knew what was coming, I’d been here before. My then-boyfriend (and now partner), who was still in NYC, spent the weekend with me as I cried, shook, ruminated, tried to distract myself, and then disappeared again back into my thoughts. It got so bad I took myself to the university hospital, where they prescribed haloperidol, a tranquilizer frequently used to calm horses. The first days of class were a blur.
Eventually, though, I began to see a therapist, who had me do something called the Y-BOCS, or the Yale-Brown OCD Scale. Combined with some of the literature she gave me, it was a revelation. I wasn’t a pathological sicko. I just had a thing. I started taking what my mum still calls “funny pills”—SSRIs in really high doses that, in OCD patients, help rewire the chemistry in the brain.
I’d like to say that I stayed with that therapist. That I stayed in therapy. That I’ve even stayed on my medication for the past 16 years (although I do now). But one of the big lies OCD tries to tell you is that whatever you’re thinking isn’t really OCD. It’s real. It’s you. It’s the real you, say the monsters, this “disease” is just another excuse to blind yourself from the evil core of your being. It took another couple of serious bouts in graduate school, the birth of my son—and the fear that the stress of the dissertation might push me over the edge—to make me commit to controlling this thing.
In a narratively article published earlier this year, Patricia Grisafi, who suffers from the contamination form of OCD, writes:
OCD is chronic. Symptoms wax and wane over the years. They mutate. I add new obsessions to the collection. I get rid of old ones. I adapt. I maladapt. I castigate myself. I try to be more compassionate.
It’s a process. Sometimes, I’m amazed I made it through the PhD. I try to forgive myself for taking so long to write the dissertation, understanding now that a lot of my anxiety was caused by fear of a relapse. In retrospect, I find new interest in the fact that my research focuses on interstitial spaces in times of change, that my Twitter handle is @terrainsvagues. In my own way, I’m trying to get to the murky, messy, uncertainty of grey.
Resources I’ve found really helpful include:
Things I’m excited to watch and read: