What if I am wrong and this is not just my OCD?

Most of us have at least heard of OCD (Obsessive Compulsive Disorder) and have a general sense of what it’s all about. However, most probably don’t know that it comes in a surprising variety of shapes and sizes. Probably the most common portrayals of OCD center around obsessions with cleanliness. The prototypical sufferer is obsessed with anxiety-inducing thoughts of contaminating themselves or others and they incessantly perform cleaning compulsions to neutralize this anxiety (such as washing their hands, using disinfectants, etc…). This is a never-ending cycle: while these washing compulsions may temporarily reduce anxiety, they create a maladaptive pattern within the sufferer, who learns that the way to make the anxiety go away is to perform compulsions. Much of the time, the sufferer is aware that their obsessions are irrational, but understanding this intellectually doesn’t make the feelings go away.

It’s hard to say exactly when my OCD symptoms began. In middle school, I used to check the corners of my room for spiderwebs: I feared that I’d be killed by a spider at night. Sometimes I’d have to repeat this checking, “to be sure” that I hadn’t missed some. These fears barely bothered me, though, and occupied very little of my time. I only began to experience distressing symptoms towards the end of high school.

My first fears involved contracting HIV and transmitting it to my girlfriend.  I had learned quite a bit about how HIV was spread during my training for teen sex education counseling. I understood that the vast majority of transmissions occurred through sexual activity and intravenous drug use, but my mind would focus on extremely unlikely, but theoretically possible, methods. What if there was infected blood on the spot on the sidewalk where I scraped my leg? What if that tweezer had infected blood on the end of it? What if I had contracted HIV unknowingly and gave it to my girlfriend? After I was given the facts about how farfetched these scenarios were, on a rational level I knew they weren’t worth worrying about. But this made my anxiety over them all the more maddening.

Growing up, I was reassured by my parents when I was worried about something. I was told my fears were irrational, and that usually made the anxiety go away. Sometimes, of course, fears are based on a distortion or misunderstanding of reality, but, with OCD, knowing that to be the case is not enough to make the intrusive thoughts go away. My physical compulsions consisted of getting HIV tests and asking various people for reassurance, but my mental compulsions were far more pervasive. Non-sufferers (and even many sufferers, including myself until recently) are probably unaware that mental activities, such as thinking about an obsession, arguing with it in your head, and replaying and reviewing past events, are also compulsions. In many OCD circles, this is commonly referred to as “Pure-O”, meaning purely obsessions, which is a bit of a misnomer since those with this form of OCD are performing compulsions in their mind. At the time, I was unaware that I even had OCD, let alone a detailed understanding of its nature. To be clear, these obsessive periods were periodic and did not keep me from enjoying my life: I was a successful student, had tons of friends, and no one except my immediate family likely had any idea that I experienced these kinds of thoughts.

The most severe and dire cases of OCD are what we see in the media because it makes for much better drama. Before I delve into my own issues, I want to make it clear that I have, from what I gather, a very mild case of OCD in that I can go months without experiencing symptoms, whereas others go years with excruciating anxiety. As a relatively high-functioning person, I feel a sense of obligation to share my story, to send the message that mental illness is not always visible and dramatic, and that plenty of people are able to live fulfilling lives despite their illness.

Most people, even some of my closest friends, would never have any clue than I had any form of OCD. Rather than the obvious forms portrayed in the media, such as excessive hand-washing, my compulsions are primarily mental. And rather than focus on obsessions that are seemingly unrelated (“If I don’t organize my room properly, my family will be killed”), my obsessions often had a small semblance in reality. As discussed in David Adam’s excellent book, The Man Who Couldn’t Stop, people with OCD obsess over things that are irrational, not in the sense that they are truly impossible, just highly improbable. Adam’s obsessions regarding contracting HIV (similar to my own, which have since lapsed, thankfully) were theoretically possible. He walks us through scenarios such as cutting himself on metal that may have previously been contaminated with infected blood. Such a scenario is extremely unlikely, but again, theoretically possible, which is all that is needed to make an OCD sufferer obsess.

It is relatively easy to spot physical actions that would be a response to this kind of compulsion, such as getting tested for HIV repeatedly. What is perhaps less well understood, even by sufferers themselves, is that compulsions can also be mental. As Jon Hershfield and Tom Corboy discuss in their mindfulness book on OCD, mental checking, reviewing, and self-reassurance are also compulsions, though, unlike repeated hand-washing, they could never be seen or known by anyone except the sufferer themselves. These compulsions are also, in my experience, more difficult to treat because they often occur before we are even aware that we are “doing” them (how often do we “catch” ourselves thinking about something that we know is irrelevant or counter-productive to the task at hand?).

After zoning out in the middle of a conversation or lecture, I occasionally ruminate about whether I have missed some crucial piece of information, perhaps something that would have altered the course of my life (in a positive way). In a sense, this is a bizarre form of the commonly discussed FOMO (fear of missing out), in that my mind can’t let go of the possibility that some thought or experience has been irretrievably lost. What’s tricky about these situations is that I can identify that the chances of this are extremely small – but this creeps towards self-reassurance, a compulsion that will ultimately lead me to feel even more anxious and mentally tormented, since there will always be a lingering voice saying, “But what if?”. Rather, the proper response (or lack thereof) is to simply accept the thoughts and sit with them.

A commonly misunderstood aspect of OCD is that sometimes outsiders believe the issue lies just in the sufferer not understanding that their beliefs are irrational or extremely unlikely. Most sufferers have insight into this fact, which is precisely what is so tormenting about it. If it were as simple as recruiting logic and reason to neutralize your fear, the disorder would likely be very easy to treat. The trouble is in learning to sit with and sink into a very uncomfortable feeling of anxiety and uncertainty. This is an element of the disorder that I suspect is likely difficult to grasp for someone that experiences little anxiety or is untroubled by entertaining various “What if?” scenarios. Perhaps one way of describing it for non-sufferers is that it is similar to that sinking feeling you might get when returning to your home country on a plane and suddenly wonder if you left your passport in the hotel room. You can’t check for it immediately because you think you may have put it in your checked luggage. You can check later of course, and the anxiety will of course subside if and when you finally find your passport. But hypothetically speaking, suppose that flight just went on and on, for the rest of your life, and you knew you would never really be able to check, to know for sure? What if you just had to sit with that feeling, seemingly forever?

In order to move past OCD, sufferers must learn to tolerate the anxiety produced from uncertainty. From what I gather, the underlying (unconscious) belief that has caused me the most trouble is that anxiety is something that we must get rid of and fend off, i.e. we are only anxious because we just aren’t thinking clearly about something, or we would be less anxious if we could just do a little more internet research to prove our fears are unfounded. Thus, to beat OCD, one really has to do something quite counter-intuitive: accepting and even inviting anxiety rather than chasing after comfort and calm.

One particular take on OCD on which I strongly agree with Adam is that OCD really ought to be treated as something more on a spectrum than a yes/no binary. OCD communities criticize people for saying they are a “little OCD” about such and such a situation, since non-sufferers don’t really understand what it’s like to be overcome by the disorder to the point where it’s disruptive to their functioning. A fair point, but perhaps there is also some truth to what they say. When I bring up some of my obsessions to others, they often say they’ve experienced similar intrusive thoughts and have even performed what many would regard as compulsions. Thus, the line drawn between a non-sufferer and someone with OCD is finer than we might like to admit. As someone who goes months or longer with few to no symptoms, I find this conceptualization rings true and makes more sense.

There were times in my suffering where things seemed absolutely hopeless: I felt worthless, miserable, and frustrated beyond anything else I have ever experienced. Having gone through this, it’s not hard to see why people with OCD are at an increased risk of suicide. If there’s anything positive that I can take away from these experiences, it’s an increased empathy for not only those who experience OCD, but also other forms of mental illness. I have surrendered any lurking idea that mental illness only falls upon the weak-minded, the irrational, or the addicted, and I am a better human being for it. I want to believe that my rationality alone will save me from emotional and psychological suffering, but I now know that not to be the case. I consider myself lucky in that I have been educated on treatments for mental illness and have a support network that doesn’t shame me for my suffering. Not everyone is so lucky, and I hope we can work towards a world that makes everyone as fortunate as I am.