15 Facts About OCD That May Surprise You

The truth about what it's like to have obsessive-compulsive disorder.

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You probably know a persnickety person who color coordinates their clothes closet, or a germaphobe who keeps a vat of hand sanitizer handy. But quirks like these are not necessarily signs of OCD, which is shorthand for obsessive compulsive disorder, a type of anxiety disorder.

"People, really, they just don't get it," said 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 said people mean no harm; they're just clueless about what it really means to have the condition.

"What really bothers me," said Dotson, "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

People who have OCD experience "recurring, unwanted thoughts, ideas, or sensations (obsessions) that make them feel driven to do something repetitively (compulsions)," explains the American Psychiatric Association (APA). The repetitive behaviors can significantly interfere with a person's daily activities and social interactions.

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. If they don't carry them out, they can experience overwhelming feelings of anxiety and fear.

Simply put, "OCD is a disorder of catastrophic overreaction to normal thoughts," said Jim Claiborn, PhD, a psychologist in South Portland, Maine, who specializes in treating people with OCD. For example, someone with OCD may return home to check and recheck whether they locked the door, causing them to be late most days. In an extreme case, they may never leave the house because they are stuck checking the lock and questioning whether they locked or unlocked it, for hours.

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A Lot of People Have OCD

The National Institute of Mental Health (NIMH) estimates that 1.2% of U.S. adults have OCD.

"It's not an exotic illness; it's very common," said Diane Davey, registered nurse and program director at the Obsessive Compulsive Disorder Institute at McLean Hospital in Belmont, Massachusetts. It's also an "equal-opportunity illness," affecting anyone, Davey said.

Chances are that 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 may 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, among 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," said Davey. "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," Smith told Health. But he said he 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," said Smith.

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OCD Is More Than a Fear of Germs

People with OCD have widely varying obsessions, according to the APA. 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 perfectionism—everything must be even or exact, for example, so people may repeat body moments in symmetry. Some people may have superstitious ideas. Others are bothered by unwanted sexual thoughts or religious concerns.

Smith said his obsessions began when he was a child with fears of choking. At his lowest point, he would eat only 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 recalled lying on his hands in bed "literally as debilitated as somebody with stage 4 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," said 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

According to the NIMH, OCD is diagnosed in most people by age 19, typically with an earlier age of onset in boys than in girls.

"Sometimes women will develop OCD in the context of pregnancy, either during pregnancy or right after they've given birth," said Davey.

While OCD can affect very young children as well, Davey cautioned 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 said.

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Life Events Can Trigger OCD Flare-Ups

In a 2012 study published in the journal Psychiatry Research, 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 a personally valuable object.

But less-severe life events can also bring on flare-ups. Smith was in Los Angeles shooting a movie when he heard 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," said Smith. 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 co-workers," said Davey.

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 explained.

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OCD Can Run in Families

The National Institute of Mental Health says several parts of the brain are involved in having obsessive thoughts, 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," said Smith.

Researchers are also exploring the role of stress and the environment in OCD, according to the NIMH.

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OCD May Accompany Other Disorders

OCD can occur along with anxiety, depression, and body dysmorphic disorder, a disorder in which someone mistakenly believes that a part of their body is abnormal, according to the NIMH.

"About two-thirds of people with OCD will have at least one episode of major depression," said Dr. Claiborn.

When Dotson took 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, she "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,'" said Dotson. Three weeks after being prescribed Paxil (paroxetine), she was diagnosed with OCD.

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Don't Reassure People With OCD

It sounds counterintuitive, but telling someone with OCD that their fears won't come to fruition is exactly the wrong thing to do.

"Reassurance actually feeds OCD," said Dotson.

If I'm afraid the house will burn down, don't say, "It's okay, honey.…It's not going to," said Dotson. 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)," said Davey.

Dotson admitted 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 said.

Today, she feels she has largely overcome her obsessions. And when she 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," Smith said.

Dotson offered 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

Healthcare providers may recommend cognitive behavioral therapy, which helps people change their thinking and how they react to stressful 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, according to the NIMH, which is short for "exposure and response prevention." Through ERP, patients progressively confront the thought or thing that causes their pain and try to commit to stopping their compulsive behavior until the anxiety passes.

"It involves an enormous amount of will and determination," said Romina Vitale, a 37-year-old singer/songwriter living in Buenos Aires, Argentina, who was diagnosed with OCD at age 32. She credits ERP with helping her take charge of her life.

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