Is It All in My Head?

With diseases like chronic fatigue syndrome and fibromyalgia, what you believe about your illness influences how sick you become.

By Melissa Schorr, published on May 01, 2005 - last reviewed on July 20, 2009

Indeed, Hillenbrand had come to anticipate disaster when she tried returning to a normal life. "I had learned to expect complete collapses each time I overextended myself," she recalls. "As I began to slide into exhaustion, I would anticipate how I would soon be unable to sit up and speak, and I would become very frightened. The anxiety I experienced as I slid into collapse would feed my exhaustion, and I would become still weaker."

It's Not Just a Matter of Will

Hearing talk of "learned helplessness" can be very frustrating for chronic fatigue and fibromyalgia patients, many of whom would like nothing better than to get back to an active life. Accepting that psychology plays a role in these diseases does not mean that patients should just "will" themselves out of illness. The best treatments seem to be highly structured interventions that help patients change the way they think and behave, including cognitive and emotional therapy. For example, graded exercise therapy encourages chronic fatigue sufferers to return to activity at a carefully measured pace, much like physical therapy following hip replacement. Patients are encouraged to try walking a few extra blocks each day, instead of trying to run three miles on a "high-energy" day and risking a relapse.

More than merely instilling a positive attitude, cognitive-behavioral therapy teaches patients to reframe their expectations about what will happen if they exert themselves. Researchers at Oxford found that 73 percent of CFS patients receiving cognitive behavioral therapy for a year returned to relatively normal physical functioning, compared with 27 percent who had standard medical care or relaxation.

Those who refuse to accept the value of psychological therapies can get stuck. Some sufferers continue to seek physical proof that something has gone terribly awry, such as a virus, an environmental toxin or a faulty gene. "Patients seem to think if [their disease] is psychiatric, it makes them less legitimate, it makes their problems less real," says CFS researcher Arthur Hartz, a professor of family medicine at the University of Iowa. "But nobody with any sense blames this on the patients."

Patients with chronic fatigue who attribute their illness solely to external causes, such as a virus, seem to stay sicker than those who acknowledge the possible interplay of psychological factors. "Your beliefs about the illness are important," says Buchwald. "If you're wedded to an idea that your illness has a single specific cause, your chances of getting better are diminished, because you're not addressing parts of the illness that could be prolonging it." Instead, she suggests, patients should focus on actively following treatment advice and avoiding social isolation.

Because beliefs have such a powerful impact on well-being, the techniques that people use to cope with other diseases can backfire in the case of chronic fatigue. Ironically, patient advocacy groups may be more harmful than helpful, studies have suggested, possibly by reinforcing a sense of victimization or by giving misguided advice, such as actively discouraging all exercise.

"The support groups are very anti-psychological," says Katon. "A lot of times they act to inadvertently reinforce illness beliefs [such as fear of relapse or exhaustion] that are potentially harmful to patients." Those in support groups often report more severe illness, and say that they feel worse since joining the group than do dropouts. Critics dispute these findings, saying that dropouts leave because they feel better. However, research suggests that members are just as likely to drop out because they have grown too sick to attend as because they have improved.

Pat Fero, executive director of the Wisconsin chapter of CFIDS, remains skeptical of the value of psychologically based therapies. She points out that a good attitude alone isn't going to make symptoms vanish, and she doubts that cognitive therapy would improve her chronic fatigue. "If you're feeling negative about everything around you, yes, you're going to feel worse," she says. "But the opposite is not necessarily true: If you improve the state of your mind, it doesn't mean you'll cure yourself."

Hillenbrand, however, credits cognitive therapy with showing her how to reshape her expectations in ways that have made it easier to cope. "I have learned how to replace those fearful thoughts with more positive ones—I don't have to collapse'; 'This will soon pass,' " she says. "As a result, while I still experience those collapses, they are often less severe and briefer than they once were. I have been able to live a better, happier life."