What it's like to live with Obsessive Compulsive Disorder

This started on Tuesday, when I made my family turkey burgers, innocently patting them with my hands. And here I am, on Friday, and my hands still smell like meat.

I've washed and washed. I've Purelled. I've citrus-scented Purelled. I've bathed several times, more than enough to wash away any remaining meat. As the days go by, the smell is a little stronger, a little more rotten. And me? I'm lifting my hands to my nose, my hands to my nose, my hands to my nose. Confirmed, confirmed, confirmed.

I try to be logical. When the thought materializes, I hear the morbid absurdity of the science-fiction scary words in my head (you are rotting from the inside, and nobody can smell it but you). And that's when I understand what is going on.

Ah, I tell myself. It's my OCD. Right. Of course it is. In the years since I was first diagnosed with obsessive-compulsive disorder—age 11, unable to sit in our living room because the sight of the couch cushions not aligning turned me sweaty and bug-eyed—I have spent much time distinguishing between what is real and what is an invention of my malfunctioning brain. That I could taste the listeria in a cantaloupe, that I could feel the fecal germs left on the door handle of the public restroom were maybe not things that were going on outside my mind in what others call reality.

It forces me to exist in a fuzzy cloud of half reality, to be in constant conversation with myself, relying on me—already with some faulty wiring, the irony!—to reassure me when I'm unsure of what is and what isn't. OCD is sometimes concern that I will hurt someone by accident. I considered this a minor trick the disorder played on me until I had kids and I became sure that I would drop them or stab them with the knife across the kitchen. It is sometimes concern that spores from the tissue you used and threw away will magically wander into my nose, which is two yards away. It is concern that God will punish me if I don't lock the door three times.

It is the sudden belief that I have a (and then there are the thoughts that come in like this and interrupt the other thoughts, like I am going to drive my car into oncoming traffic, just a few inches to the left, and no one will know I didn't do it on purpose) blood disease. It is the smell of meat on my hands. OCD takes any shape at any time. The only guarantee is that it usually won't make sense and I will never have seen it coming.So I concede my hands probably don't smell like meat.

But when I put them up to my nose to check if this acknowledgement has made the hallucination disappear, it hasn't. I go to Target, do a quick edit on a story I'm writing, make spaghetti, overcook the spaghetti, go to a Zumba class my friend is teaching that I sort of don't want to go to but you have to show up when you say you will.

"To understand OCD, look at the words themselves," psychotherapist Tom Corboy, executive director of the OCD Center of Los Angeles, tells me. "Obsessions are repetitive, intrusive ideas, mental images, or impulses. Compulsions are repetitive behaviors one does to decrease the anxiety created by obsessions." Which is a good way of explaining it.

So my obsession right now (the scab I have, which is a scrape, is actually cancer. I know where I got the scrape, but now I also think it's skin cancer, so) is that my hands smell like meat. I am doing two compulsions to deal with it. I am smelling my hands, which is called a checking behavior, done to confirm an obsession. And I am washing my hands, which is called a compulsion, meant to get rid of an obsession.

Moving on is not always the elegant thing we hope it is. Exactly why OCD happens, science is puzzling out, but it's probably a complex genetics/ environment smoothie. Onset typically happens before age 25, and it tends to run in families. People say that it is often a traumatic event— a death, something that made you feel real danger for the first time—that triggers symptoms.

There is also evidence that the brain structure or blood flow might be subtly different in people with OCD, says Ben Greenberg, MD, PhD, professor of psychiatry and human behavior at Brown University. But he adds it's unclear if these differences cause OCD or are due to its symptoms.

There are 2.2 million Americans living with OCD, half of them women, and so there are 2.2 million ways that OCD manifests. OCD is squishy that way. It's classified as its own disorder, but you rarely see it alone. Instead, think of it as the center of a Venn diagram.

The other disorders that overlap it are depression, mostly, but also generalized anxiety, bipolar disorder, body dysmorphia, some eating disorders, phobias, tics, Tourette's syndrome, and skin picking and hair pulling. I've dealt with both of those last two, plus anxiety.

The people who have it worse than I do can't write articles about it. Like the man I met who couldn't leave his bathroom for days because he was sure there was still shit in his colon that he had to get out, or the woman I spoke to who wouldn't go near her niece because she was sure she'd accidentally molest her, even though she has no pedophiliac instinct whatsoever.

There is the woman who got in trouble for using too many office supplies—she had to throw out the envelopes she was addressing because of an almost imperceptible shift in her handwriting. And of course, there are the seemingly endless ways OCD can interfere with your sex life: preoccupation that you'll get pregnant, fears of contamination, not to mention the lower sex drive associated with depression, anxiety, and many of the drugs used to treat them.

OCD exists on a spectrum. There are people like me, gritting their teeth and talking themselves down. And there are people who can't leave their homes.

Believe it or not, how severe your OCD is considered is not based on how weird or scary your obsessions are but on how well you resist your compulsions, says Corboy. The difference between someone with OCD and someone who merely has weird thoughts is that the person without OCD is able to say, "Wow. That was a weird thought," and move on. Moving on is not always the elegant thing we hope it is.

Yet somehow, between that Jack Nicholson movie years ago and plot lines on Glee and Girls, OCD became a badge of adorableness. "I am so OCD about cooking," says a friend. What she means (punch her in the face and then lick her nose) is that she's meticulous, that she's upset when she puts in a pinch of salt when the recipe calls for a dash.

Sure, she would have preferred to get the recipe right, but when she didn't, she didn't throw out her batter. She didn't wash the dish and start over. She didn't go into a set of completely unrelated rituals that took up time and peace of mind from her already fraught day. To associate OCD with a sort of anal-retentive behavior pattern is to totally miss the point.

We don't all have a little OCD. And I don't know why we want it. It's hard to see a monster you battle every day reduced to an adorable manic-pixie-dream-girl quirk that people seem eager to fake for some neurotic cred. (This excludes Lena Dunham's portrayal in Girls. When I saw her stick a Q-tip into her ear so that she could finally, finally get at whatever it was she knew was in there, I wanted to weep with relief at having been seen and known.)

I was in a store with a friend once and we passed a novelty cutting board that was actually called the OCD Chef Cutting Board, with precise lines for measurements. "You should get this," she laughed. "I don't cook," I told her and walked ahead to another aisle.

The first OCD behavior I recall was at age 7. I would lick the inside of my wrists, just a quick flick. One day, that need simply ended, and I now had to scrape the top of my shoes against the sidewalk, evenly, on both sides. People around me noticed my compulsions and made fun of me. So slowly, I found things I could do with no one looking. I count my teeth with my tongue. I cross and uncross my toes inside my shoes. Whatever it is I'm doing, to this day, I can guarantee that you don't know I'm doing it. See, I just did it.

At age 8, I became convinced that unless I said the traditional Jewish bedtime prayer, Shema, for every single member of my extended family, they would die. I said this prayer every night for everyone from my parents and sisters to my great-uncle Jack, whose last name I can't remember and probably never knew, to my grandmother's sister whom I'd only met once. I'd say it for a total of 21 relatives; it took about 45 minutes. It never once occurred to me that I have very little power to affect change in the universe, even when Uncle Jack did die. A cousin had married by then, and I had already started saying it for her new husband.

When I was maybe 22, I went to a movie with my mother. Nothing happened in the movie. The movie was a comedy. Suddenly, though, I became convinced that anything I touched without prophylactic coverage would rip open my skin. The movie ended, and I got in a cab, putting my sleeves over my hands to pay and open doors, got home, and called in sick. That weekend, I hosted one of my best friends' bridal showers at my apartment with socks over my hands.

At my disorder's most insidious, I would count words in sentences and only end a conversation when the person I was talking to ended her conversation with an odd number of words. I would keep her talking until she did (in a fix, saying "good-bye" did the trick, since the usual response— "Bye"—is one word, and the second most common—"See you later"—is three). It's exhausting, but it's much scarier to imagine not doing it.

At some point in my teen years, I was able to count the number of words that ended in "e" contained in any sentence. Oddly, I don't think I could do that now if I tried. The needs come on like superpowers and with them an ability, and they leave the way Superman's did when he went into the ice booth. It's now as if I never needed to do those things; it's as if I never even could. I have long since replaced that need with a hundred others.

And yet, I swear that you'd meet me and you wouldn't know any of this. Like most people with OCD, I'm an achiever and I'm adaptive. I don't think of myself as someone who suffers very much. I handed in a draft of this story to the editor, who has known me a long time, and she couldn't square these descriptions of my inner thoughts with the outwardly goofy person she knows. I thought about telling her how many words she'd used in each sentence she'd said but thought better of it.

The thing I've been doing wrong since my hands began smelling like meat is to continue to smell them. This checking behavior only exacerbates the problem. My mind is seeking a reassurance (is my mother breathing? I have to go to my mother's house, which is an hour away, right now, though it is the middle of the night, to make sure she's breathing) that no number of facts can offer. By continuing to raise my hands to my nose, I am legitimizing my obsession, something I know better than to do.

The obsessive thought is a fly that must be swatted. This I've learned in cognitive behavioral therapy, and it is by far the most recommended approach to dealing with OCD. Doctors often prescribe exercise too, although they aren't quite sure why it works, and antidepressants. Dr. Greenberg has been a pioneer of brain surgery, involving the insertion of a kind of pacemaker that sends electrical pulses to affected areas. However, medication and surgery are not substitutes for cognitive behavioral therapy. They are, instead, ways to control the symptoms, like intense anxiety, enough so the patient can learn the therapy.

How it works: The minute I think my hands smell like meat, there's a brief moment when I try to stop the thought and understand that it is a fiction. Do my hands smell like meat? No. I made those burgers days ago. Am I rotting from the inside? No, that's not something that happens. Each time the thought occurs to me, I challenge it like that. I call it clicking override. I don't, as you'd suspect, try to prevent myself from thinking about meat. I just try to change the nature of the thought. Most of all, I try to stop smelling my hands.

In cognitive behavioral therapy, no respect is given to the obsession. No attempts are made to figure out if I had a traumatic experience with a hamburger as a teenager. The obsessive thought is a fly that must be swatted.

My cognitive behavioral therapist, whom I began seeing in my 20s and still visit when I have flare-ups, is interested only in tuning me up, reminding me how to confront these problems when they are bigger than I am. She asks me to figure out whether the thoughts I'm having are the truth, and she encourages me to distance myself from them by realizing they're blips in my imagination.

"The worst thing you can do is wonder what these thoughts mean," says David Barlow, PhD, professor of psychology and psychiatry at Boston University. That they might say something about you—other than the fact that you have OCD—is not an idea worth exploring. It's just a misfire in your brain, a false alarm.

Three weeks after I make the turkey burgers, I take my 3-year-old to a concert. We're sitting outside in the shade, he on my lap, holding a plastic bag of snacks. He hands me an apple slice; he's sharing. I put it in my mouth and notice something. My hand doesn't smell like raw meat anymore. I allow myself one deep sniff. It's true: The smell that was never there is gone.

In the time since my hands smelled like meat, I've written two stories, performed terrible Neil Diamond karaoke, laughed so hard at a Baywatch rerun with my best friend that I thought my bladder would burst. I've danced at a wedding until I sweat through my tights. I've stopped at a red light, realized my husband was right next to me, and driven with him down the suburban street, drag-race style.

I've been fine. I am fine. It's just, god, when it finally lifts, you can feel how much lighter you are and, before it becomes heartbreaking, it is the feeling of a window open on a summer day.