By Kirstin Fawcett, Contributor|U.S. News|May 21, 2015
“Maybe you have a roommate who constantly worries that she left her hair straightener turned on – even if she remembers unplugging it earlier that morning. Perhaps your spouse is so fixated on keeping a section of the house clean – say, a countertop or swath of floor – that he or she ignores an overflowing sink or a full trash can. You might have a friend who likes to count things – mailboxes, cracks in the sidewalk, lampposts. Or maybe your father confided in you that he experiences intrusive and disturbing thoughts he can’t cast aside no matter how hard he tries.
There’s a good chance these people have obsessive-compulsive disorder, or OCD – a brain-behavior disorder that affects approximately 2 to 3 percent of the population, according to Jeff Szymanski, a clinical psychologist and executive director of the International OCD Foundation. And if you don’t know much about OCD, the comments you offer could come across as hurtful, ignorant or dismissive instead of curious, helpful or empathetic.
Here are some phrases to think twice about saying to a friend, family member or acquaintance with OCD:
“Don’t worry, I’m kind of OCD sometimes, too.”
Maybe you’ve never been diagnosed with OCD – but you can, on some level, relate to constantly dwelling on a certain thought, or needing to make sure everything around you is “just so.” Being obsessive – or compulsive – about things is normal, Szymanski says. However, being prone to analyzing things or being fastidious about your surroundings is not OCD – it’s just your personality.
According to experts, OCD refers to frequently upsetting thoughts, or obsessions, that cause extreme anxiety in an individual – who then tries to relieve this anxiety by engaging in rituals or behaviors known as compulsions. Everyone experiences obsessive thinking and engages in compulsive behavior to an extent. But folks with OCD experience it so intensely they feel mentally and/or physically uncomfortable. They often engage in rituals with the goal of making unwanted thoughts or feelings go away – not because they enjoy performing them – and as much as they’d like to, they can’t always control these actions.“OCD is when these thoughts, feelings and behaviors occur to the point where they’re interfering with a person’s ability to participate in day-to-day activity,” Szymanski says. “You can’t get to work, you can’t sleep and you can’t engage in relationships the way you’d like to.”
So if you’re cleaning your house for hours at a time because you like doing it, you don’t have OCD. But if you’re cleaning because you’re trying to obliterate bad thoughts and feelings, you might. And whether you’re likening your own behavior to OCD as a way to empathize with someone else or because you’re simply joking about your own quirks, it can come across as insensitive and trivializing to those who actually have the disorder, says Wilson Freeman, a 31-year-old photographer from Baltimore who has OCD.
“If you, yourself, do not have OCD, try not to compare your own experiences to the disorder,” Freeman says. “It sounds well-meaning to say ‘I know what it’s like,’ but unless you have the disorder, you don’t know what it’s like.”
“You don’t look like you have OCD.”
“Someone with OCD looks very normal on the outside – and might be in every other way,” says Dr. Wayne Goodman, a psychiatrist and chief of the division of Tics, OCD and Related Disorders at Mount Sinai Hospital in New York. “People think, ‘How could someone who seems so rational and normal inside and out be plagued by all these ridiculous, obsessive thoughts and behaviors?”Anyone – male or female, young, adolescent or elderly – can have OCD. And just because someone is high functioning or successful doesn’t mean he or she is immune.
“Want to come over and clean my house?”
One misconception about OCD is that those who have it are obsessed with cleanliness and germs, and engage in compulsions such as cleaning or hand washing. But there are many other obsessions and compulsions.
Scrupulosity, for example, is a form of OCD in which individuals to become hyper-vigilant toward religious or moral practices, obligations and rituals. As a result, they’ll exaggerate a sacrament or pray multiple times a day. Some people with OCD experience unwanted thoughts that are occasionally sexual and violent. Such thoughts don’t mean the people who have them are deviants, or that they’ll act on them. But they can cause great distress, and prompt those who have them to avoid potentially triggering situations or engage in other compulsions they believe will undo harm – say, mentally reviewing an event or performing a task to make everything feel “right.”
Other typical obsessions range from perfectionism to losing control in some way to causing harm to oneself or others. Common compulsions include counting, touching things or oneself in a repetitive manner or checking on things that might appear inconsequential or minor but nevertheless inspire great worry: Was that bump I hit in the road while driving actually a person? Did I leave the stove on? These ruminations can prevent people from leaving their houses for days at a time, says Dr. Michael Jenike, founder and medical director of the OCD Institute at McLean Hospital in Belmont, Massachusetts. In the most severe cases, they can trigger depression or suicidal tendencies.Even if someone with OCD is focused on cleanliness, they’ll often become so focused on one section of a house – say, a surface – that the rest will appear a mess. Or the sight of a mess will create such anxiety that they won’t clean it up, Freeman says.
“If you walked into my house, you’d never think I had OCD,” says Freeman, whose compulsive behaviors revolve around cleaning sticky surfaces or dirty hands. “The irony is that many people with OCD … are fairly messy because we get so overwhelmed by things, it’s easy to avoid them if we don’t feel like tackling it. This creates a feedback loop that is, in itself, triggering – which makes us even less likely to deal with it.”
“You’re being irrational.”
If you have OCD, you likely know the thoughts you’re experiencing – or behaviors you’re engaging in – are irrational. But that doesn’t make them feel any less real, says Grae, a 23-year-old graduate student with OCD who declined to provide her last name.
“It’s hard to turn away from it,” she says. “It’s probably something you don’t like to do, but it’s something that you have to do. Until you do it, maybe you won’t be able to stop thinking about it, or maybe you think that something bad will happen. Maybe the thoughts and feelings hurt you physically, or make you feel physically ill.”
“Why can’t you just stop?”
Many people with OCD are self-conscious about their behaviors and able to hide them from friends and family members. They’ll wait until they’re in the privacy of their own home to engage in repetitive rituals or behaviors. Or they’ll go on vacation, and suddenly their symptoms vanish once they’re removed from the stresses of everyday life. So why, friends and family members often ask, can’t they just make themselves stop?It’s not that easy, Szymanski says. “Thought-suppression strategies have a paradoxical effect for all of us,” he says. “We experience more of that thought, and it increases in frequency and intensity.”
“It’s all in your head.”
Experts don’t know exactly what causes OCD. They do, however, say there’s strong evidence that it’s a brain-based disease. Studies indicate there might be a genetic predisposition for OCD, and fMRIs suggest people with OCD often have brain abnormalities, Jenike says. Infections and head trauma are also tied to the development of OCD, as are life factors and environmental circumstances. Since OCD is most likely biologically based, don’t accuse someone of imagining it or making it up.
“It’s just a quirk/tic. It isn’t serious.”
“Many people think OCD is trivial or frivolous,” Goodman says. “Some of the symptoms might seem like an exaggeration of normal quirks, so it’s easy not to take it seriously. And often, patients in support groups try to keep a sense of humor about the disorder. But the symptoms, while seeming odd from the outside, are very serious to the person they afflict. It consumes their life, controls what they do and interferes with their ability to work or have a normal social life.”
Many patients, Goodman says, have treatment-resistant OCD and have exhausted myriad conventional treatments, including medication or behavioral therapy. “They’re quite ill,” he says.
“I had someone once tell me to try yoga” to alleviate my symptoms, recalls Taylor Miller, a 25-year-old graduate student from Newark, Delaware, who was recently diagnosed with OCD. “I did go to yoga, and I thought ‘OK, this is cool, but it isn’t going to fix my life.'”
While relaxation techniques can help calm the anxiety that stems from obsessive thoughts, they won’t treat OCD symptoms or make them go away, experts say. So don’t inform someone that taking up jogging or meditation will help cure his or her disorder.
“Relaxation is very important, but doesn’t take away the fact that my brain just attacks me,” Miller says. “There’s no amount of breathing techniques or mindfulness that’s going to take away from the fact that my brain wants to fixate on a typo I made in a paper.”
“You just need to learn to live with it.”
If you have OCD, you should simply get used to it and move on, right? Not necessarily. There are treatments available, and telling someone to “just accept” the disorder can both prolong their suffering and prevent them from seeking help, experts say. In fact, according to the International OCD Foundation, some estimates indicate it can take up to 14 to 17 years from the onset of symptoms to get an appropriate diagnosis and treatment.
Various medications can alleviate the symptoms of OCD, as can therapy. Clinicians use a form of cognitive behavioral therapy called exposure and response prevention therapy to treat anxiety disorders, obsessive-compulsive disorder and phobias. Therapists ask people with OCD to put themselves in situations that trigger their obsessions and feelings – but to refrain from engaging in the compulsive behavior. Once they learn to leave the thoughts or feelings alone, they discover that they dissipate on their own.
Of course, not everyone responds – or wants to adhere – to the same treatments. But the small act of getting help, no matter what form it takes, can be life-changing, says Miller, who was recently prescribed medication for her OCD. She’d never sought treatment for her condition because “I was rather high functioning,” she says. “I thought, ‘Well, there are people who are really struggling.'”
But soon after starting her medication, “I noticed a night and day difference,” Miller says. “I used to have to clean off and dust my desk before I would work each day. I hadn’t really noticed that this was a ritual when I was doing it. But [recently] I was able to just sit down and write a paper. I didn’t have to move anything or dust or clean. It sounds like a little thing, but that’s a lot of time I’m saving now.”