What can the family do?

After a 40-minute shower, you feel reasonably clean. You close the shower door, then realize you touched it with your dirty hands when you entered the shower. You wash your hands. You turn off the handle with a paper towel, but think that you might’ve accidentally touched it with your skin. Knowing people use the sink after they use the toilet, you feel dirty all over. You can feel the germs on you. You shower again.

You’re driving to the store when your heart starts to pound. The hospital is two miles away. Your heart beats faster. You never should’ve left the house. You use your cell phone to call your mother as you head toward the hospital. This is your third visit in the past month, but you’re sure it’s an emergency this time. Your heart feels like it’s going to explode. You walk into the emergency room and up to the receptionist. “I think I’m having a heart attack,” you tell her.

Such behavior can seem absurd, but two to three percent of the population understand it all too well. For people suffering from one of two severe anxiety disorders, obsessive-compulsive disorder (OCD) or panic disorder with agoraphobia (PDA), their days are ruled by their illnesses, says Dianne Chambless, professor of psychology and codirector of UNC-CH’s Anxiety Treatment Center.

Those suffering from OCD have thoughts that they would agree are not rational but, nonetheless, they feel compelled to act upon over and over again. Those suffering from PDA are terrified all the time that they will have unexpected severe experiences with anxiety—panic attacks—and fear these attacks will kill them or drive them insane. As a result, they develop extreme avoidance behavior.

Treatment for OCD and PDA has about a 70 percent success rate. The standard has been to focus solely on the patient. Chambless and Gail Steketee, a professor of social work at Boston University, wanted to find out if the patients’ relationships with others in their households influenced whether the patients completed the treatment and, if so, how well they did. They treated patients with four months of exposure therapy and, for OCD patients, exposure plus ritual-prevention therapy.

“In exposure therapy, the therapist and client construct a hierarchy of the client’s feared situations,” Chambless says. The hierarchy is arranged from easiest to hardest in terms of the amount of anxiety the patient anticipates experiencing. The patients suffering from PDA confront situations that they are compelled to avoid for fear of panic; the patients suffering from OCD enter situations that trigger their urges to perform rituals but resist carrying out these repetitive behaviors.

In and between sessions, the patient practices an activity until that activity no longer causes distress. Then he or she moves on to something more difficult. Say a man with OCD returns repeatedly to the route by which he drove to work and checks his bumper again and again for blood, convinced he hit a child. In therapy, he might work from driving on a highway with no pedestrians to driving in front of an elementary school as the children are let out—without the therapist in the car. He restrains any desire to return to a specific spot or check his car for damage until eventually the desire goes away entirely. “The therapist breaks the problem down into small steps and provides as much support as necessary, then gets out of the way,” Chambless says. Rather than looking at patients’ pasts or what is in their psyches, psychologists help them cope now.

Throughout treatment, Chambless and Steketee interviewed the patients’ family members individually and videotaped them talking with the patients to examine communication patterns. The intent was to see if there was a relationship between how patients interacted with their families and which patients completed and improved with treatment.

Eighteen of the 101 participants in the study dropped out before the tenth session. “There was a lengthy process of consent to make sure the patients understood what was involved,” Chambless says. “When they got to the point where the challenge was physically before them, some could not go through with it.”

A patient was more likely to drop out of treatment or not improve if the family was either emotionally overinvolved (“your pain is my pain”) or critical, with the distinction that the criticism was hostile rather than constructive. It’s the difference between saying “I don’t like how what you’re doing makes me feel” and “I don’t like you.”

The emotionally overinvolved are excessively self-sacrificing—never going out without the person, carrying a beeper at all times, some even accompanying the person on dates. They give up their lives. Chambless suspects that such behavior has a negative effect on treatment because the patient is less apt to confront fears if the relative shares in those fears, and the actions of the relative reinforce the inadequacies of the patient. “If you live with someone who treats you like a fragile piece of glass, you might think of yourself as a fragile piece of glass,” Chambless says.

Nonhostile criticism either had a positive affect on treatment or didn’t affect the treatment one way or another. “A patient often tried harder when confronted with something that frightened her if she had a relative that was critical but did not reject her as a person.” Without hostility, patients were 50 percent more likely to improve than those with hostile family members. With the hostile family members, patients were six times more likely to not even complete the treatment.

When the family members were videotaped talking with patients about the most important problems in their relationships, hostile relatives were negative in face-to-face interaction and could not—or would not—come up with constructive solutions. The nonhostile relatives were more likely to find some means of resolution. For those who are afraid to get in a car and drive, Chambless says a family member should be taught to say, “Maybe it would help if we practiced driving together,” rather than, “Stop the nonsense, get into the car, and suck it up!”

As for the emotionally overinvolved, relatives should be educated as the patient begins treatment. “They must understand that it won’t hurt the person to confront anxiety,” Chambless says. One woman was afraid her husband, suffering from OCD, would have a heart attack if he became too upset. Therapy was never successful because facing his fears seemed—to both him and her—too risky. That thinking was actually counterproductive. “His physician said that the ongoing stress of the OCD was much riskier than any immediate behavior therapy,” Chambless says. Both patient and family must know that if the patient gets upset, that’s okay; it is going to get better over time. “The overinvolved have their own fears that are not addressed properly. We want to spend more time listening.”

With graduate student Steffany Fredman, Chambless is now developing ways to look at the videos to see how the emotionally overinvolved act in face-to-face interaction; maybe then Chambless will understand how the feelings of the relatives are channeled to the patient. “In this area of research, there are connections between how the relatives feel and the impact on the patient,” Chambless says. “We wonder how it is communicated.”

Researchers also plan to study and categorize family members’ gestures from the videos. Voice tones, facial expressions, body language, and intrusion of space are all examples of ways a person may attribute blame—often unintentionally. Just raising an eyebrow can send a strong message.

Chambless hopes the study will lead to intervention that can improve the chances of successful treatment by keeping the family better informed and directly involved. “Two or three percent is an undercount of the people suffering from the problem because there is also the family around them.”