Doctors suspect that by continuing to focus on an elusive biological cause, they could be missing out on the other half of the picture—and the chance to find a solution. They have begun to re-examine the role of severe stress, depression and even personality traits in initiating and fostering disease.
Some of the evidence is hard to dispute. For example, those suffering from chronic fatigue or fibromyalgia are significantly more likely than healthy people to have experienced depression, anxiety, physical abuse or a life-altering stressful event well before they developed their disease. In one study conducted by Wayne Katon, professor of psychiatry at the University of Washington in Seattle, 90 percent of fibromyalgia patients had a prior psychiatric diagnosis. Another study, at the University of Leeds, found that patients who had developed chronic fatigue were nine times more likely to have suffered stressful events and difficulties in the three months before the onset of disease than were healthy subjects. The implication is clear: Unlike other diseases, these disorders are closely connected to psychological distress, whether it takes the shape of a major psychiatric disorder or simply poor coping mechanisms.
More than Depression
Still, it's clear that chronic fatigue is not just a bodily manifestation of clinical depression. While those who are depressed often are tired, and those who battle any chronic illness tend to grow depressed, the two are clearly distinct. Clinical depression doesn't usually result in a sore throat or post-exercise fatigue, and antidepressants aren't generally good treatments for CFS. "Depression and fatigue are fundamentally different," says Leonard Jason, a professor of psychology at DePaul University in Chicago. "If you ask a person who is depressed, 'What would you do tomorrow if you were better?' they say, 'I don't know.' Chronic fatigue sufferers will give you a list of 10 things."
The body's stress response may be crucial to triggering diseases like chronic fatigue. Stress activates the body's hypothalamic-pituitary-adrenal axis, leading to a surge of the hormone cortisol, which suppresses the immune and other bodily systems. If some outside agent such as a viral infection comes along during a period of high stress, the system may overreact or even spiral permanently out of whack.
"Most patients will tell you they had a history of being under a lot of work-related stress, or struggling with anxiety or depression, and against that backdrop, a second event happened—a car accident or a viral infection," notes Dedra Buchwald, an internist at the University of Washington's chronic fatigue clinic in Seattle.
For Laura Hillenbrand, author of the best-selling book Seabiscuit and noted chronic fatigue advocate, long-standing sickness began with a common illness—and a shock. While a junior in college, she was traveling with friends down a country road late at night when a deer darted in front of the car. Though the driver swerved and avoided the collision, for passenger Hillenbrand, the traumatic experience was followed almost immediately by nausea, fever and chills. That night, she was diagnosed with a nasty bout of food poisoning. It was followed by weeks of extreme lethargy, leaden limbs and weight loss—symptoms that have never fully abated.
Did the fright of that evening's near-miss undermine her body, rendering her vulnerable to food poisoning? "I really don't know," muses Hillenbrand, who wrote her best seller largely from her bed. "It is my belief that CFS is an opportunistic disease that preys on bodies that are compromised. It is an interesting coincidence that I began to feel the symptoms just a moment after that experience of extreme stress."
It's the Reaction that Counts
Wayne Katon, whose research focuses on depression, anxiety and somatoform disorders, makes the case that stress and anxiety play a primary role. In his view, personality doesn't just create a hospitable environment—it's an integral part of the diseases. He believes that the initial injury or illness is almost irrelevant. What really matters is the interpretation and emotional reaction. Patients develop what he calls "catastrophic cognitions": beliefs that if they start to get back to their activity, they will damage themselves further.
According to Katon's clinical observations, patients with chronic fatigue or fibromyalgia tend to be highly driven overachievers unaccustomed to feeling any loss of control. When injured or sickened, those who decide that the pain or illness has overwhelmingly and permanently damaged their bodies come to feel victimized and unable to cope. Learned helplessness sets in, and patients can find themselves perpetually depressed and inactive. "They have trouble getting back to that old lifestyle, and what sets in is depression," Katon suggests. "In our modern society, for people who have driven themselves, fatigue becomes a palatable way out of a difficult existence." Although Katon is well regarded in the field, this perspective is still widely debated, at conferences, in medical journals and even by peers at his own medical center.
However, some patients do describe their experience in similar terms. "Stress seems to be the killer," Howard admits. "That's what I think happened with me. I was a superachiever and a perfectionist. I was going to make it, no matter what. I didn't anticipate the consequences."
Fear of further damage and disability may keep patients from trying to get back to an active life. "Whatever caused this impairment is probably not what's keeping it going," Katon says. "What's keeping it going to a large extent are the misbeliefs about getting back to an active lifestyle."
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