Inspired Writer Contest Finalist
Guilty Until Proven Ill
Uncertainty, pain, and guilt in invisible OCD.
The Japanese train station is busy but low-key. Our luggage spread over a row of empty waiting seats, my dad squints at a fold-out map to determine our next steps. That’s when I notice it: the gym bag, a little worn, sitting behind a garbage can on the other side of a glass door.
I nudge my dad. “Hey. You see that bag there? No one has claimed it. Maybe we should report it.”
“Probably belongs to a homeless person,” he says. “Now, according to this, we should head towards — ”
“I really think we should report it. That’s what they said on the announcement in the train, ‘report unattended items.’”
“I’m very certain it’s just someone’s dirty gym clothes.”
“Still. What if there’s a bomb?”
“Ah, I know where to go.” He gathers our stuff and begins to walk with purpose.
I lumber after him, towards a jam of human traffic at the turnstiles. “Dad, I really think we should report it. That’s what they tell us to do. What if there’s a bomb, and if I don’t report it, it’ll be my fault if — ”
“Enough!” His voice rises slightly. A few people look at us. “We have to go,” he continues, quieter but also firmer.
An hour later, we check into the hotel and I’m still nervous because the hotel overlooks the train station. Then again, if the bag does blow up and kill me, I deserve it. I check the news that night: no bombs. I Google the prevalence of terrorism in Japan: very low. I check the news the next morning: no bombs.
Obsessive-Compulsive Disorder (OCD) is a very difficult thing to explain or even describe. In fact, I bet some of you reading this wouldn’t think the story I just told was OCD at work.
But you might know the OCD stereotype: a person who washes their hands a lot, or who needs to line their bookcase “just so.” Sure, these are some manifestations of OCD, but not all OCD is the same.
OCD is a disorder with an estimated lifetime prevalence of 2.3 per cent. According to the National Institute of Mental Health, “People with OCD may have symptoms of obsessions, compulsions, or both.” Obsessions are repetitive, intrusive thoughts that cause distress. Compulsions are strong urges to do something to relieve that distress.
Now, everyone experiences obsessions and compulsions sometimes, but for folks with OCD, obsessions and compulsions can become debilitating. For example, if you feel anxious after having touched something dirty, you might wash your hands to feel better. This may satisfy you, but a person with OCD will worry about whether they washed their hands enough. So they’ll keep washing. And washing. And washing.
Hand-washing is just one manifestation of OCD. Not all OCD is visible. For some people, ruminating endlessly about perceived problems and asking others for reassurance are compulsions. For example, I ruminate over the possibility that bags are bombs and ask for my dad’s reassurance that they are not. Some people call this invisible OCD “Pure O.”
Places with bags aren’t my only trigger. In school, I was terrified by the possibility that I may have cheated on a test or plagiarized an essay. I would go over everything I wrote with a fine-tooth comb, to make sure each and every idea I expressed was 100% original and that if it wasn’t, it was cited in the utmost clearest way.
My belief was that if I cheated on an assignment, my grade for that class would be fraudulent. This would mean my transcript was fraudulent, causing my entrance into university to be fraudulent. Likewise, any subsequent job I got as a result of having graduated university would be fraudulent and dishonest.
On some level, I know my reactions to assignments and airport bombs are overblown. In general, I am a good person who doesn’t cheat or murder people. Besides, mistakes happen and people aren’t perfect. Yet I still obsess over slim possibilities. And what if my worries aren’t OCD at all, but real catastrophic possibilities? What if I’m guilty until proven ill?
So you see, OCD is less about being neat and organized, and more about being intolerant to uncertainty (however slim the possibility of disaster), feeling hyper-responsible for everything, and fearing guilt. For people with OCD, these feelings of intolerance, hypersensitivity, and guilt are overwhelming.
At the height of my OCD, I would take long, three-hour naps in the middle of the day to “shut off” my brain, because unconsciousness was the only way to escape ruminating thoughts.
They say when you’re experiencing mental health distress, just ask for help!
The outpatient psychiatric intake centre is housed in an old hospital building of yellowing concrete. It reminds me of an underfunded public school. I pick my way down a set of narrow stairs. With each step, the parade of thoughts in my brain grew louder: You’re a crazy person! You’re going to a hospital for PSYCHIATRIC problems! You’re a crazy person!
The room the psychiatric nurse questions me in is nice enough, I guess. It’s clean with comfy chairs. Pamphlets about communicating with diverse patients dot the walls. There’s a tissue box for your convenience. The nurse dutifully takes notes as I recount stories and symptoms and sob into government-funded tissues.
The therapists I had seen before had good intentions, but I didn’t think any of them “got” me. I knew deep down that what I had was something different than general worry. Finally, one therapist suggested I try the psychiatry route.
The good thing about psychiatrists is that they’re covered by provincial healthcare, while private counselling is quite expensive. The psychiatric nurse and psychiatrists also nailed down what I thought I’d been suffering from all along: OCD.
But the psychiatrists were far from perfect. They put me on a heavy regimen of antidepressant drugs but didn’t do much more than that. For the next two and a half years, I returned every few months or so. Appointments were quick, cold, and clinical. Any side effects? Here’s your script.
Yet medication helped. My anxiety decreased, I could look at perceived threats like airport bags in a more rational way, and I began to accept uncertainty in some areas of life. But I knew I couldn’t rely on daily medication forever; I wanted to fundamentally re-learn the way I think.
There is a belief that therapy is supposed to make you feel better, safer, more comfortable. That’s not the case with Exposure and Response Prevention (ERP), a recognized treatment for OCD. In ERP, you trigger obsessive anxiety on purpose and actively choose not to perform compulsions to relieve it.
As luck would have it, there was an ERP group treatment program at my university, run by PhD students. Fees were based on income, so it was actually affordable to me as a student. I signed up immediately, excited to finally work with real OCD experts.
With ERP, you start with smaller things that only trigger slight anxiety, such as not washing your hands after you use the washroom. A more difficult ERP might mean touching a public toilet seat and not washing your hands. One ERP for me was to visit the airport and resist the urge to report or ruminate about bags that look unattended (which I did as a sort of “final project”).
I also did ERPs where I left messes or thumb tacks on the ground and then resisted the urge to clean up or ruminate about harming someone. As I gained more exposure to stressful situations, my anxiety decreased over time.
The idea is, to live life, we must accept uncertainty at times. If we practice accepting the uncertainties we give ourselves in ERP, we will be better equipped to accept everyday uncertainties.
Now, ERP is all fine and dandy when you’re doing it with qualified professionals and in the company of other OCD sufferers who understand what you’re going through. (In fact, I still keep in touch with my treatment classmates — shout out to our WhatsApp group!)
But ERP gets tossed out a window when a global, life-threatening pandemic hits.
The pandemic has caused anxiety for many people, OCD or not. In a public health crisis, it can be difficult to discern the line between legitimate health worries and obsessive, panic-driven worries.
Personally, I worry about asymptomatically spreading the virus to other people and murdering them. I nag my family a lot, telling them to take precautions they think are overblown. Thankfully, OCD experts published some easy guidance: follow public health guidelines, but don’t go beyond, or you may venture into OCD territory.
So, no, I am not practicing ERP where I skip washing my hands, but I do resist overdoing it.
My OCD experience has changed significantly throughout my life. As a child, my OCD was obviously problematic — I used to make myself say good-night to my mom an even number of times or else she’d die.
My OCD as an adult is sneakier. Sometimes, I don’t know whether a particular fear (such as unattended bags) is a legitimate fear or an OCD fear. This is one of the toughest parts of OCD for me — the uncertainty. In these instances, I can only do my best, react as rationally as I can, accept the discomfort, and move on.
Writing about OCD helps. Because while the general public is more educated than ever on mental health, OCD remains poorly understood. In fact, in March, a psychiatrist — out of all people! — wrote a column in the Wall Street Journal about how everyone can benefit from being a little OCD during Covid-19. This piece was extremely insensitive to real people with OCD because it painted our suffering as something desirable. So I wrote a parrying piece back.
My whole life, I felt misunderstood. I used to walk around the school playground with endless ruminations playing in my head, thinking, “If only I was a normal kid. Normal kids don’t have to deal with this.” I knew something was wrong with me, but because my obsessions can be bizarre, I bit down my tongue and hid my compulsions, afraid of being called “crazy.”
People with mental health challenges are often told to “get help,” as if this was an easy, one-stop solution. No, getting help is the very beginning of a long and challenging journey — if you can even access help in the first place. I need to make this clear: I am extremely fortunate. I have access to universal healthcare, a social and financial safety net, and people who care.
Moreover, OCD requires specialized care, and to access that care, you must first be able to articulate something that is very difficult to articulate.
My friends and family still don’t really get my OCD, but I don’t blame them. My dad has grown more sympathetic, more patient. My partner thinks my brain works in strange ways but listens to my rants anyway. Sometimes my loved ones give me reassurance — which, to be honest, hurts me more than helps because my compulsion is to seek reassurance — but it’s the thought that counts.
Sometimes, all I want is to explain how I feel and have that taken seriously. I hope that by sharing my story, other people will have a more nuanced and sympathetic understanding of OCD, and that they will approach other mental health disorders in a similarly open-minded way. Mental illnesses can be difficult to understand; the least we can do is listen.
Disclaimer: This article was not written by or with a medical professional. If you want to learn more about OCD, please consult an authoritative resource such as the National Institute of Mental Health or the International OCD Foundation.
