The truth about what it's like to have obsessive-compulsive disorder.
January 14, 2016
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You probably know a persnickety person who color coordinates her closet, or a germaphobe who keeps a vat of hand sanitizer in her purse. But quirks like these are not necessarily signs of OCD, short for obsessive compulsive disorder, a type of anxiety disorder.
"People, really, they just don't get it," says Alison Dotson, president of OCD Twin Cities, a Minneapolis affiliate of the International OCD Foundation, and author of Being Me with OCD: How I Learned to Obsess Less and Live My Life. Having struggled with OCD much of her life, the 36-year-old author says people mean no harm; they're just clueless about what it really means to have OCD.
"What really bothers me," she says, "is when you point it out and people … say, 'Oh, it's not such a big deal.'"
Yes, it is. And here's what else people with OCD want you to know.
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OCD is a serious mental disorder
The Diagnostic and Statistical Manual of Mental Disorders (DSM), the "bible" of psychiatry, defines OCD as having obsessions, compulsions, or both—to the point that they're distressing and time consuming.
Obsessions are persistent thoughts, urges, or impulses that people try, but often fail, to ignore or suppress. Compulsions are repetitive behaviors or mental acts that people with OCD feel compelled to perform, and if they don't, the result can be overwhelming feelings of anxiety and fear.
Simply put, "OCD is a disorder of catastrophic overreaction to normal thoughts," explains Jim Claiborn, PhD, a psychologist who specializes in treating people with OCD in South Portland, Maine. For example, someone with OCD may return home to check and recheck whether she locked the door, causing her to be late most days. In an extreme case, she may never leave the house because she's stuck checking the lock, and questioning whether she locked or unlocked it, for hours.
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A lot of people have OCD
The International OCD Foundation says that in the United States alone, as many as 1 in 100 adults and 1 in 200 children have OCD. That's roughly 2 to 3 million adults and a half million kids.
"It's not an exotic illness; it's very common" says Diane Davey, registered nurse and program director at the Obsessive Compulsive Disorder Institute at McLean Hospital in Belmont, Mass. It's also an "equal-opportunity illness," affecting both men and women, she adds.
Chances are, you know someone with OCD. But it's probably not the person cracking offhand jokes about it; people with OCD often feel ashamed of their obsessive thoughts and behaviors and may struggle to hide their compulsive behavior.
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OCD is not a joke
Some people seem to think OCD is a personality trait, like being a clean freak or organization junkie. They treat OCD as a cute quirk when, actually, it causes anguish.
In the 1997 romantic comedy As Good As It Gets Jack Nicholson plays an obsessive-compulsive novelist who avoids stepping on cracks and performs other rituals. What's missing from this charming story is the darker side of life that OCD sufferers endure.
"I think that's really one of the biggest myths about OCD: it really isn't funny," Davey adds. "It's a disorder, and it's very distressing for people who have it."
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OCD is a type of anxiety, not psychosis
People with OCD may have compulsive thoughts, but they don't lose touch with reality, as people with schizophrenia do.
Ethan Smith, a Los Angeles-based writer, director and producer, struggled with OCD for years. His uncontrolled thoughts and fears of harming himself led to three separate psychiatric hospitalizations. Smith feared he would impulsively start bashing his head in, for example. One time he was so ill "that doctors thought I was psychotic"—only Smith knew better.
"The healthy part of your brain knows that the OCD part of your brain—whatever it's telling you, whatever the thought is—is completely irrational," he explains. When he listened carefully, the tiny voice inside of him would tell him, "Ethan, this is completely irrational; you know it's bullsh***."
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OCD is more than a fear of germs
People with OCD have widely varying obsessions. Some people are averse to germs and bodily fluids, so they may feel compelled to wash their hands or bathe excessively. Others ruminate about losing control, harming other people, or contracting a disease. Some obsessions relate to perfectionismeverything must be even or exact, for example, so they may repeat body moments in symmetry. Some people have superstitious ideas. Some are bothered by unwanted sexual thoughts or religious concerns.
Smith, now 37, says his obsessions began in youth with fears of choking. At his lowest point, he would only eat chicken broth and mashed potatoes. As an adult, he developed a fear of harming himself, so he would toss away food he had just prepared because he feared he may have poisoned it. At one point, he recalls lying on his hands in bed "literally as debilitated as somebody with stage IV cancer."
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It's not just hand-washing, either
People with OCD feel compelled to repeat certain thoughts or behaviors to counteract their obsessions. Frequent hand-washing, for example, may provide a temporary escape from nagging worries about being clean. Some people develop rituals that involve repeatedly tapping their fingers, repeating tasks in threes, and checking and rechecking on things.
"A compulsion can actually be an avoidance," says Dotson, who dealt with religious obsessions by praying a lot and sexual obsessions by avoiding situations where she might touch someone inappropriately.
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OCD affects children and adults
OCD can occur any time from preschool through adulthood. Typically, it first appears in the pre-teen years (ages 8 to 12), or between the late-teen years and early adulthood, says the International OCD Foundation.
"Sometimes women will develop OCD in the context of pregnancy, either during pregnancy or right after they've given birth," Davey says.
While OCD can affect very young children as well, Davey cautions against jumping to conclusions. "Kids can have a lot of ritualistic behaviors and routines that are very soothing to them that don't necessarily mean they have OCD," she explains.
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Life events can trigger OCD flare-ups
In a 2012 study, Italian researchers identified three traumatic events that were associated with an outbreak of OCD symptoms, especially in women: hospitalization of a family member, major personal physical illness, and loss of personally valuable object.
But less-severe life events can also bring on flare-ups. A number of years ago, Smith says he was in Los Angeles shooting a movie amid news reports of an E. coli outbreak affecting tomatoes in parts of the country, including California.
"I was a wreck for days, and I hadn't been near a tomato, but it didn't matter," he says. He was so afraid of getting sick that he holed up in his hotel room.
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Many people with OCD hide it well
People with OCD are quite masterful at keeping their condition under wraps. In fact, the International OCD Foundation says it can take 14 to 17 years from the onset of symptoms for people with OCD to get appropriate treatment.
"They feel embarrassed about what they're doing, they think they're the only ones that are doing these things, and so they really tend to hide their symptoms from their families, from their coworkers," Davey says.
Any behavior that seems over the top—whether it's lots of hand washing, excessive showering, or excessive use of paper towels and toilet paper—may be a sign of OCD, especially if the person seems distressed, she explains.
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OCD can run in families
The National Institute of Mental Health says several parts of the brain are involved in obsessive thoughts and compulsive behaviors and fears. While scientists don't know for sure why some people develop OCD, they think your genes likely play a role.
"I've met tons of families where the kid has it, the mom has it, the grandfather has it," Smith says.
Researchers are also exploring the role of stress and the environment in OCD, says the International OCD Foundation.
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OCD may accompany other disorders
OCD can occur with eating disorders, depression, and other anxiety disorders, according to the NIH.
"About two-thirds of people with OCD will have at least one episode of major depression," Claiborn says.
Dotson's depression stemming from her OCD pushed her to the brink during a trip to New York City. Instead of having the time of her life, all she wanted to do was sleep. And, on the flight home, "I wished for a split second that we would crash." The day she returned home, she called for help. "I was crying and I said, 'I'm depressed. I need to go on an antidepressant or something,'" she says. Three weeks after being prescribed Paxil, she was diagnosed with OCD.
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Don't reassure people with OCD
It sounds counterintuitive, but telling someone with OCD that her fears won't come to fruition is exactly the wrong thing to do.
"Reassurance actually feeds OCD," says Dotson.
If I'm afraid the house will burn down, don't say, "It's okay, honey…It's not going to," she says. Instead, you might say, "It could. The house could burn down, but we've done everything we can. … We need to leave now and just trust that it's going to be okay and, if it's not, we'll have to deal with it."
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You can lead a normal life with OCD
"People can lead very productive lives [with treatment]," Davey says.
Dotson admits that her mind was "very preoccupied" before her diagnosis. Yet, she continued to work as a proofreader and copy editor. "I was able to put on the brave face," she says.
Today, she feels she has largely overcome her obsessions. And, when Dotson feels panicked, she reminds herself that everyone has unpleasant thoughts and tries to let them slip away.
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Listen; don't judge
OCD is like any other physical or mental diagnosis. You cannot tell someone to just snap out of it.
"It would be like telling a diabetic to start producing insulin: 'C'mon dude, stop being such a wuss,'" Smith says.
Dotson offers this piece of advice: "If someone tells you 'I have OCD' in kind of a confidential way, don't question it; just listen."
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Remission is possible
Doctors may recommend cognitive behavioral therapy, which helps people change their thinking and how they react to situations. They may also prescribe antidepressant medications, or a combination of treatments.
OCD's "gold standard" treatment is a type of cognitive behavioral therapy called ERP, short for "exposure and response prevention." Through ERP, patients progressively confront the thought or thing that causes their pain and commit to stopping their compulsive behavior until the anxiety passes.
"It involves an enormous amount of will and determination," says Romina Vitale, a 37-year-old singer/songwriter living in Buenos Aires, Argentina, who was diagnosed five years ago. She credits ERP with helping her take charge of her life.