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

In the mid 1980s, Carole Howard was a highly driven academic, simultaneously pursuing a master's degree from Loyola University in Chicago and serving as a college administrator—until the fateful morning when she got out of bed feeling not quite herself. "I woke up one day in a lot of pain," Howard recalls. "I thought I had the flu."

If only it were that simple. Her aching muscles and sluggishness kept her in bed for weeks, and never really went away. Howard was eventually diagnosed with fibromyalgia and chronic fatigue syndrome, two devastating chronic ailments that crippled her academic career and landed her on full-time disability. "You can live with this," says Howard, who now serves as president of the Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivities Coalition of Chicago. "But you have to accept doing half of what you used to do. I have a two-hour limit before I need to sit or lie down."

Beyond accepting her physical limitations, one of Howard's biggest challenges has been dealing with people who doubt that her illness is real. "My family was never supportive," she says. "There were a lot of derogatory comments." Even today, when knowledge about these diseases is much more widespread, Howard still encounters skeptics. A woman helping her around the house dismissively told her: "You're not sick—you don't look sick." "I just went ballistic," Howard recalls. "I was so enraged."

Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role. "I didn't know what a vacation was," she recalls. "I never stopped. I didn't realize there was a difference between the Energizer Bunny and me."

Howard's suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

These "multi-symptom illnesses"—which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity—have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the "yuppie flu."

Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer. Those who have watched a close friend or family member with one of these syndromes can find themselves wondering: Is this real? Is she making this up? Patients themselves fear the worst: Will I ever get my life back? Will no one believe me? Is it all in my head?

"The big challenge is credibility," says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a patient advocacy group. "The illness is still not well understood, and when people don't see anything unusual about you, they question whether you're sick or not."

However, the war between doubters and advocates has waned. The consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness—but it's not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse.

"Anybody who has a chronic illness has alterations in biological and psychological mechanisms," says James F. Jones, M.D., a chronic fatigue expert with the U.S. Centers for Disease Control and Prevention. "You really can't separate the brain and the body, because psychology is biology—everything that takes place in the brain is chemical or electrical. You can't have the one without the other."

Diagnosis by Default

For the estimated 800,000 Americans suffering from chronic fatigue and the 3 to 6 million with fibromyalgia, the symptoms are all too physical—as debilitating as flu, and as persistent as tuberculosis. The diseases disproportionately affect women: Nearly 90 percent of fibromyalgia patients, and two-thirds of CFS sufferers, are female. Patients diagnosed with chronic fatigue have endured six months of complete exhaustion, plus a cluster of debilitating symptoms: They grow forgetful. Hurt when they swallow. Suffer throbbing headaches. Toss and turn in their sleep. Those with fibromyalgia may also suffer fatigue, but mainly describe inexplicably aching joints and muscles across their entire body.

But although these diseases are among the more extensively researched of these chronic disorders, patients may still flounder for years searching for an explanation. Symptoms are broad and diffuse, and the diseases have no reliable test, so a diagnosis is usually made by ruling out everything else.

In the search for the cause, researchers have turned up some significant biological abnormalities among chronic fatigue sufferers: Stress hormones, brain scans, and immune system measures often show characteristic differences compared to healthier populations. Researchers haven't given up looking for an underlying infectious cause, since sickness can be misleading—asthma and ulcers, for example, were only recently understood to be primarily physical diseases. At one point, the Epstein-Barr virus, which infects nearly all adults, was thought to be a culprit in CFS or fibromyalgia. But this idea, and others, have fizzled.