Many Suffer Shame of OCD Needlessly

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Caught in a Loop: Many Suffer Shame of OCD Needlessly

By Stephanie Sampson, M.A.
January 2002

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 (OCD diagnosis) 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 for OCD 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").

CBT helps people change their thoughts and feelings by first changing their behavior. Behavior therapy for OCD involves Exposure and Response Prevention. Exposure is based on the fact that anxiety usually goes down after repeated contact with a feared object. For exposure to be of the most help, it needs to be combined with response or ritual prevention. In the latter, the person's rituals or avoidance behaviors are blocked. For example, a person with OCD may be asked to touch a toilet seat that he considers contaminated (exposure) and then resist washing his hands afterwards (ritual prevention). As therapy progresses, the patient is asked to resist the compulsion for longer and longer periods of time. "Homework" assignments are given so that the patient can practice with real-life situations that he or she encounters at home and on the job.

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Cognitive Therapy, the other component of CBT, is often added to Exposure and Response Prevention to help reduce the catastrophic thinking and exaggerated sense of responsibility typical of OCD. "People with OCD 'jump to conclusions' about what is going to happen. For example, a mother might assume that simply having a thought about hurting her child means that she will do it, but in fact it is only a thought and actually a pretty common one," says Steketee. "In cognitive therapy, the patient is asked to pay attention to her thoughts and beliefs and to evaluate how rational or logical that 'conclusion' really is."

Steketee uses several exercises to help patients correct their faulty thinking. "For example, for any given scenario, we ask what the patient would think if a friend argued that such-and-such would happen. If someone believes they'll cause harm to their family, we ask them to play judge and jury and logically think about whether their case would stand up in a court of law."

In milder OCD, CBT alone is often the initial choice, but medication may also be needed if CBT is not effective enough. Individuals with severe OCD or complicating conditions that may interfere with CBT (e.g., panic disorder, depression) often need to start with medication, adding CBT once the medicine has provided some relief. SSRIs are the type of medication most often prescribed initially for OCD. "Research shows that a combination of these two types of treatment results in the best outcome," says Hollander. However, the doctor may start with one or the other treatment first, and add the second one later. Whichever route you and your doctor decide on, experts advise that you:

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.

How Family Members Can Help Someone with OCD

Educate yourself about the disorder and about available treatments. Helping the person to understand that there are treatments that can help is a big step toward getting the person into treatment. In some cases, it may help to hold a family meeting to discuss the problem. When your family member is in treatment, talk with the clinician if possible. You could offer to visit the clinician with the person to share your observations about how the treatment is going. Encourage the patient to stick with medications and/or CBT.
Consider therapy for the family as a whole. OCD symptoms can cause a great deal of disruption and the way families react to the symptoms can affect the disorder. A therapist can help family members learn how to gradually disengage from the rituals in small steps and learn to manage the distress that results.
q Watch what you say. Negative comments or criticism from family members often make OCD worse, while a calm, supportive family can help improve the outcome of treatment..
Be on the alert for signs of relapse. You may notice a reoccurrence of OCD symptoms before the person does. Point out the early symptoms in a caring manner and suggest a discussion with the doctor. Learn to tell the difference between a bad day and OCD, however.
Make time for yourself. Try to keep up those routines and activities that keep you physically and emotionally well. Have family members take turns in checking in on the person so that no one person is the "caretaker."

SOURCE: Adapted from Obsessive-Compulsive Foundation website at www.ocfoundation.org

What Family Members Can (and Shouldn't) Say

Not Helpful	Helpful
Oh, that's ridiculous	OK, let's talk about it.
There's nothing there.	Did you actually see any pieces of glass?
Forget about it.	Sit a moment and relax.
You're slipping	Why don't you wait a bit and see how you feel then.
Not this again!	It's not OK to wash just to make sure. That only gets you into trouble.
I don't want to hear about it	I understand how you might feel that way.
That's crazy	What are the realistic chances that someone might get hurt?

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

Caught in a Loop: Many Suffer Shame of OCD Needlessly

Neatnik or Something Else?

The Hidden Disorder

Getting Better

What Family Members Can (and Shouldn't) Say

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