Real Talk: Living with OCD


Since I was diagnosed with OCD four years ago, there have been some moments that look like this: the topic of anxiety enters the conversation, someone might talk about their experience with anxiety, I join in to nod my head attentively and agree when we conclude anxiety is a widespread issue. A funny feeling alerting me of my quickened pulse holds me back from adding much else, unless the attention is off me. The conversation is good; I wonder about what might happen if I begin talking about myself, but I don’t.

In the beginning, my symptoms were wholly visible for anyone who spent more than a few minutes with me, pre-hospitalization: avoiding stepping on cracked pavement, neglecting food, assigning meaning to specific numbers in specific repetitive acts. Four is positive, seven negative. Both are really important to me, as are two and eight — my everything-is-right-again numbers.

When I was taken to the hospital, my democratic doctor asked me what I thought I needed. I said lots of therapy. He kind of agreed, before explaining to me that there was a name for what I was experiencing. I had never once considered that it could be OCD, because, among other things, I was working from a definition of OCD that ultimately left me with a hollow understanding of it. This was news. I remember trying to piece together this new information, wondering in what ways OCD was now a part of me, and for how long.

The lightning-fast way OCD entered my life made dealing with it difficult without immediate professional intervention. I knew I was breaking down in a real way. When I could no longer eat without associating the act with an awful thought, when I changed my walking style to reflect what felt “right,” and when I stopped walking altogether.

I could not make the connections then that I later made after treatment, especially after befriending folks at the hospital who were often much older than I was. Four years later, I value practically everything about our community meals, our failed attempts at group therapy, our brief conversations.

With a lot of effort, I was able to keep it hidden from my friends. I did not want them to know, like I didn’t want them to know after I was released from institutional care. I had someone in my life assume I was depressed. I did not bother to correct them. I’m kind of a private person anyway, but my decision to remain distinctly silent seemed steeped in a particular kind of apprehension.

I can trace this apprehension, this hesitation to speak, in the number of times I hear us define OCD narrowly and in ableist terms; when we refuse to draw connections between broader systems of power and our individual experiences, including how those systems inform the experience of illness itself; when we fail to actively establish communities of support and care; when we rely on stereotyping to direct our understanding; when the underrepresented are further stigmatized for blurring the categories we use to assign social value.

After years of trying to convince myself that my illness is a hurdle, I’m more interested now in my OCD as a process. I’m no longer invested in figuring out its source. I focus on managing its manifestations in my body — the compulsive head turns as of late. I notice when it creates and holds onto meaning and when it initiates deep self-doubt.

Part of managing my OCD has included being gentle with myself, but it has also meant silence, as both sort of overlapped. Becoming visible with OCD, I think, means extending that gentleness outwards—creating the kind of community around you that is supportive of our need to be gentle with one another and ourselves.

Because popular notions of OCD are often hygiene-related, it’s hard for some folks to imagine how different people live with OCD in diverse ways, and how some particular manifestations of OCD are subject to greater stigma. OCD includes, but is certainly not limited to, hand washing and cleanliness. OCD is not synonymous with these things; when you do use OCD in conversations, I hope you speak in a way that does not trivialize the experiences of people living with OCD.

OCD encompasses much more, with obsessions and compulsions existing along a spectrum. What is often left unexplored is the relationship between them: our behaviours, whatever they may be, are meaningfully crafted, repeated, to alleviate the deep anxiety we feel. The anxiety might come from fear of causing harm (like mine does), in which case we engage in compulsions to help endure very real moments of stress.

I struggle with intrusive thoughts of a distressing nature that enter my mind frequently and without warning, leaving me feeling, at my core, like I’m a bad person. In the rare case I recognize my OCD represented somewhere, my symptoms are usually demonized. What is important for me to understand is that I am not, contrary to popular belief, my thoughts. Since I have little control over them, I’ve come to believe they are not a very useful measure of my self-worth. I‘ve abandoned every “inspirational” Tumblr post telling me different.

I haven’t felt until recently that I could put myself into the dialogue. I worry my contribution might scare people away, make them uncomfortable. I realize this discomfort comes from a lack of understanding, or perhaps a lack of compassion. I convince myself that it’s better to keep quiet. Or wait until someone really asks, as if my silence is actually a shield. I’ve become comfortable with passivity in favour of the illusion of safety.

Feminist poet Audre Lorde helps me to see that illusion for what it is, and also that I want to move beyond it; I can’t stay there in that half-space as a justified response to my fear. I am not actually safe. It’s important, though, to recognize I’m afraid even as I carefully select spaces, or creep into silences flush-faced, from which to become visible.

Lorde reminds me that even while I’m afraid, speaking is still a viable goal. That there is room for me to share the hidden, and that hiding was an attempt to self-preserve in a society that devalues me. That self-preservation, however, might slowly begin to include a voice and a community.

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