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Laura Hillenbrand writes her masterpieces despite suffering from Chronic Fatigue Syndrome

... Since 1987, Hillenbrand has been sick with chronic fatigue syndrome, which has mostly confined her indoors for the last quarter century....

She is 47, with pale skin, palomino hair, an open face and probing eyes. At 5-foot-5, she has a muscular physique honed by yoga and physical therapy. One peculiarity of chronic fatigue syndrome is the degree to which it can remain invisible: A patient may be in excruciating pain without showing any outward sign of illness. There is still no simple laboratory test for the disease, nor any way to confirm its diagnosis. There is even some debate over what to call it. Many doctors and patients, including Hillenbrand, believe the words “chronic fatigue” sound trivial. They prefer the term “myalgic encephalomyelitis,” or M.E., which refers to inflammation in the brain and spine. Other doctors resist this name, questioning whether patients with the disease reliably exhibit this inflammation. Dr. Charles Shepherd, a medical adviser to the ME Association in Britain, told me that decades of mystery around the illness have only worsened the suffering of victims. “I was taught at medical school 40 years ago that this was all hysterical nonsense,” he said. “It was an illness which was either ignored, or dismissed, or regarded with extreme skepticism.”

When Hillenbrand first developed the syndrome during her sophomore year at Kenyon College, she experienced the stigma firsthand. Racked by exhaustion and too sick to attend classes, she moved back into her mother’s home in Bethesda, Md., where she soon lost touch with nearly all her friends and plunged into a combination of physical and emotional distress. A string of doctors tried to convince her that the illness wasn’t real — it was all in her imagination, they said, or maybe it was delayed puberty, or perhaps heartburn, or an eating disorder. After one examination, she asked to use the bathroom, only to discover the doctor listening at the door for signs of a bulimic purge. Even her mother wasn’t sure what to believe. “She was not supportive, and that was the hardest thing of all,” Hillenbrand told me. “When almost everyone in your world is looking down on you and condemning you for bad behavior, it’s very hard not to let that point of view envelop you, until you start to feel terrible about yourself. I just began to feel such deep shame, because I was the target of so much contempt.”...
Read entire article at NYT Mag