Caught in a Loop: Many Suffer Shame of OCD Needlessly
By Stephanie Sampson, M.A.

A man always locks his apartment door in the same order every night. He won't get out of bed without tapping his slippers first. Germs freak him out. He must carefully negotiate walking down the street because he can't step on any cracks in the sidewalk.

Recognize him? It is Jack Nicholson's character in "As Good as It Gets," a man with Obsessive Compulsive Disorder (OCD).

"Not only did the movie increase awareness about OCD-the tapping, checking and fear of contamination-but it really showed the shame associated with the disorder and how it interferes with relationships and daily living," says Gail Steketee, Ph.D., assistant professor at Boston University's School of Social Work.

About 1 in 50 Americans suffers from OCD, although they may not be diagnosed for years.
"As a result, too many people suffer needlessly from this very treatable disorder," says Steketee.

Neatnik or Something Else?
But why wouldn't Nicholson's character just be considered a perfectionist or neatnik? "As in many other anxiety disorders, the issue is first, do you have the symptoms of the disorder, and second, to what degree do those symptoms interfere with your life," says Steketee. "While we all clean, arrange, and check sometimes in some situations, people with OCD 'have' to do those things and they do them constantly."

As the name suggests, OCD is characterized by two main symptoms: obsessions and compulsions. Obsessions are recurring thoughts, impulses, or images a person experiences (at least at first) as intrusive or senseless. Common obsessions include thoughts about contamination, about doing harm to others, persistent doubts about having performed certain tasks such as turning off appliances, or an extreme need for orderliness.

Compulsions are repeated behaviors or physical or mental rituals designed to relieve the discomfort of the obsessive thoughts (unfortunately that relief is only temporary). Some of the most common compulsions are cleaning, washing, checking, repeating actions, being excessively slow and methodical, and hoarding. Mental rituals include praying, listing things in your head, and rearranging certain words or phrases in your head.

About 80% of OCD sufferers have both obsessions and compulsions, but a person may have only one symptom and still suffer from OCD. Ironically, most people with OCD recognize their obsessions are coming from within themselves and that their compulsions are excessive and unreasonable (e.g., checking whether the door is locked will not protect your children from becoming sick). To meet diagnostic criteria for OCD, symptoms must take up a lot of time (more than an hour a day) or significantly interfere with the person's work, social life, or relationships. OCD symptoms may wax and wane over time.

Also key in OCD is the link between the obsessions and the compulsions. "While everyone has had intrusive or obsessive thoughts in their life, in OCD those thoughts are attached with unpleasant feelings like anxiety, guilt or disgust, and the person has to do certain things (compulsions) to relieve those feelings," says Steketee.

Onset of OCD is usually gradual and most often begins in adolescence or early adulthood. In fact, about one-third to one-half of adults with OCD report that the disorder actually began in childhood.

The Hidden Disorder
Unfortunately, OCD often goes unrecognized for years. The lag time between beginning of symptoms and appropriate treatment may be as long as 17 years, according to Eric Hollander, M.D., professor of Psychiatry and Director of the Compulsive, Impulsive and Anxiety Disorders Program at Mt. Sinai School of Medicine in New York. What accounts for that lag time? The first reason is stigma. "Many people with OCD are ashamed and humiliated by what they consider the bizarre nature of their obsessive thoughts," says Hollander. "Also they usually recognize that checking or washing or hoarding will not in reality change anything, but they feel powerless to stop. As a result, they are less likely to share their problem with a family member or their doctor."

Second, OCD may not be the most obvious diagnosis. "Patients often come into their doctor's office complaining of depression or anxiety," says Hollander. (About two-thirds of OCD patients have suffered at least one bout of depression in their lives.) "Unless the physician or therapist is thinking about the possibility of OCD, they won't ask the right questions and the diagnosis isn't made."

Getting Better
Research over the last 15 years has shown both medication and specific kinds of psycho-social treatments to be effective in treating OCD. But getting better requires a commitment from everyone involved.

"Treatment succeeds when there is motivation to change," says Hollander. "Because of the shame and humiliation of this disorder, one of the first steps is awareness and education," he says. Both the patient and his or her family need to improve their understanding of:

• The nature of the disorder. OCD is a medical problem involving dysfunction of certain brain chemicals. It is not a character flaw, nor a reflection on the quality of the person.
• Treatment options. During the last 20 years, two effective treatments for OCD have been developed: Cognitive Behavioral Therapy (CBT) and treatment with medications known as Selective Serotonin Reuptake Inhibitors (SSRIs). About 60-70% of OCD patients can be helped with existing treatments, according to experts.
• Role of the patient. OCD will not go away by itself. "Patients start getting better when they realize they have to face their fears and that the increased anxiety that often accompanies treatment won't last forever," says Hollander. Family support is also key to keeping sufferers motivated to stay with their treatment (see p. x, "What Family Members Can Do").

• Give medication a fair trial. A substantial body of evidence shows drugs are highly effective in OCD. However, patients need patience. "It may take up to three months to see the effect of an SSRI," warns Hollander. "Waiting is difficult but you need to give the medicine time to work before giving up on it." It's also important to follow your doctor's orders on how much medication to take and when to take it. If you are not happy with your initial experience, your doctor can try changing the dose, switching to a different drug, or combining drugs. Do not reduce or increase the amount you take without specific instructions from your doctor.
• Manage expectations about treatment. Knowing what to expect during treatment makes going through it easier. For example, anxiety often increases during exposure therapy, and learning that you can get through it OK takes a few trials. Medication may take a while to kick in. "Although family members may assume that their loved one's irrational thinking and behaviors should just stop, recovery is in reality a step-by-step process that takes time," says Steketee.
• Take advantage of support networks. Keeping motivated throughout treatment is always a challenge. Participating in self-help groups, finding a buddy for exposure "homework," seeking out books or Internet sites on OCD, and going to family therapy are some of the many ways to gain insight the recovery process.
• Report changes in symptoms. Symptoms may arise or increase in intensity for a number of reasons and may require adjusting treatment. Medications, although safe, do have side effects (be sure to report any to your doctor). Depression and other anxiety disorders may co-exist with OCD. Talk to your doctor if you begin to eat or sleep too much or too little, feel constantly lethargic or hopeless or have suicidal thoughts. Stress can also exacerbate OCD symptoms.

What Family Members Can (and Shouldn't) Say

SOURCE: Adapted from When Once is Not Enough: Help for Obsessive Compulsives by Gail Steketee, Ph.D.
and Kerrin White, M.D. (New Harbinger Publications, Oakland, CA, 1990), p. 129-130