What It's Really Like To Live With OCD

by Pamela J. Hobart

It started the way OCD often does: as a preteen, I began worrying about things being dirty. Pens and markers especially — if a classmate borrowed them, I'd bring them home to wash, or douse them in hand sanitizer. Eventually, it became easier to simply throw them away.

At my worst, I could literally lose days to obsessing over a dirty public restroom I'd seen. My imagination would cook up weird and totally implausible scenarios; I'd imagine I had dipped my lipgloss in the toilet, and then I'd start feeling as if it had really happened (even though, on some level, I knew it hadn't).

When you're having increasingly disgusting and bizarre thoughts at every turn (Peeing in the blender? Eating excrement and forgetting about it?) and going to greater lengths to get rid of them (endless washing), doing anything normal becomes virtually impossible. Often, I would have an OCD thought at the front of my mind for upwards of two-thirds of my waking hours. I'd sleep in ridiculous 16-hour stretches just to escape.

So you can imagine how frustrating it is to me that my disorder is often used as some sort of punchline; a farcical illness reserved for eccentrics.

it's extremely annoying how often I hear people claim that they are sooooo OCD over some tiny little quirk. At least one out of a hundred people around you also has some "quirks" — only those quirks lurk in her brain all day long and keep her from working, going to school, and maintaining relationships.

According to the National Institute of Mental Health, obsessive-compulsive disorder affects roughly one percent of adults in the United States. But because symptoms often begin in childhood, that actually underestimates OCD's prevalence in a population at large. You almost certainly know someone who is a true sufferer.

OCD's name comes straightforwardly from the two components of the disorder, both of which are experienced by most patients: obsessions, which are repetitive, unwanted, and upsetting thoughts (usually about contamination, order/symmetry, or moral wrongs); and compulsions, which are the actions sufferers use to try to ease their anxiety about the obsessions (like hand washing, counting, and checking).

This destructive obsession-compulsion cycle is a healthy human response gone haywire. It's normal to feel apprehensive, averse, and even a little anxious with respect to things that are dirty, morally wrong, or somehow "off." We've evolved to be attuned to these characteristics for our health and safety. But in an OCD sufferer, this adaptive response becomes overblown in a way that doesn't help the person to lead a better life, and actually starts to ruin it instead.

That's one of the huge differences between people with genuine OCD and people who just have obsessive-compulsive personalities: In the case of the actual disorder, people are losing an hour or more per day to distressing thoughts, anxious feelings, and the rituals they use in an ill-fated attempt to dispel them.

While obsessive-compulsive personality disorder involves some of the same behaviors, it does not involve the associated high levels of anxiety that we see in OCD. Obsessive-compulsive personalities are not distressed by their characteristics, and may even find them a point of pride. Though they can develop anger issues and crippling perfectionism, the key thing here is that their OCD tendencies aren't inhibiting their lives. Of course, some people are neither OCD nor OCPD. (Liking your blue pens and black pens in separate cups or your kitchen counter squeaky clean does not a disorder make.)

While I'm glad that obsessive-compulsive disorder has emerged in our cultural consciousness and that some realistic depictions of it are being depicted in mass media, it's extremely annoying how often I hear people claim that they are sooooo OCD over some tiny little quirk. At least one out of a hundred people around you also has some "quirks" — only those quirks lurk in her brain all day long and keep her from working, going to school, and maintaining relationships.

For these sufferers, OCD often gets worse and worse because the obsession-compulsion cycle is self-reinforcing. Luckily, with medication and/or cognitive-behavioral therapy (CBT), many OCD patients find relatively quick (if not instant) relief, and can often learn tools to keep them from fully traveling down the anxiety spiral ever again.

In particular, OCD patients seek a kind of CBT called "exposure and response prevention" (ERP). With ERP, a therapist coaches you through exposure to something that stresses you out, and encourages you not to engage in your subsequent ritual. (For instance, you might be asked to touch something mildly dirty, not wash your hands, and then handle food.)

For me, ERP made me unbelievably miserable in the short-term, but broke the cycle of escalating anxiety over time. It changed my life: I now do things — unmedicated — I never would have thought I could do; from loaning pens to strangers and putting them back in my purse, to living in a filthy metropolis and walking past drunk people's vomit on the rancid subway.

Still, the journey has been very much "two steps forward, one step" back: It's easy to slip up and wash my hands an extra time, especially if I'm stressed or tired. But in the same way giving into a compulsion drags me a bit little backwards towards that endless pit of anxiety, each time I resist a compulsion, it drags me further out of that pit, too.

When I was deciding whether or not to get a dog, I found myself having some weird OCD thoughts again: What if I poisoned the dog's water? What if I was tempted to take a knife from the kitchen and cut it? What if picking up after the dog gave me a panic attack every time?

My experiences with CBT helped me to realize that those were mere obsessive thoughts. Today, I have two dogs. I've never harmed them, and picking up after them did not ruin my life (even when I've occasionally missed with the baggie, gross). These are what "wins" look like to a person with real OCD: Doing normal stuff, even if you may worry through every minute of it, and accepting that that's actually the best thing you can do.

So please, if you can't identify with these kinds of thoughts and feelings, kindly refrain from throwing the term OCD around lightly. It's offensive to the genuine sufferers around you for whom obsessions and compulsions are major barriers to living well. You can be a quirky, unique individual without mistakenly ascribing a full-blown psychological disorder to it.

Because contrary to popular belief, this disorder is no punchline.

If you think you might have OCD, you can check out a list of other common symptoms here and find help here.