What Price Glory?

Laura Hillenbrand, author of 'Seabiscuit,' discusses her Chronic Fatigue Syndrome and how the book affected her life.

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Right. I had unequivocal symptoms. You could put a thermometer in my mouth and see I was running a fever. Yet they were trying to find reasons for making this [illness] somehow my fault. I was told I was bulimic. I was not bulimic; I never threw up. My throat was beet red; I had huge lymph nodes. I was told I was depressed. I was told I had an attitude problem and needed to get my act together. One doctor wrote down that I was simply trying to get out of school, which was quite amazing. I had a 4.0 average at college. I was not having problems in school.



What finally turned the situation around?

I went to Baltimore to Johns Hopkins and saw the head of infectious diseases. He said, "Do not listen to these people. You have a very serious illness. It's called chronic fatigue syndrome." He couldn't do anything for me but to finally get a diagnosis, to finally have someone be compassionate and take me seriously was an enormous event.



So this physician was able to diagnose the problem, but couldn't do anything for you?

Not really. The reason so many doctors had shrugged me off was that this illness was only then being recognized. In their defense, there wasn't anything in the diagnostic manual. But because they didn't want to believe that they didn't know everything, they wanted to find a reason why it was my fault.

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The following year the Centers for Disease Control recognized CFS and NIH began researching it in earnest. Today, there's enough research on CFS to be able to give it a definitive diagnosis.



Are there prescriptive protocols for people with CFS?

There are some things they tell you to do. A lot of it is very simple. You can't stress yourself. You can't push too far because if you do, your whole body will collapse and you can wind up for six months or eight months back in bed again.



You learn that right away because you make mistakes. I made a really big one. I was starting to get better when, in 1991, I tried to take a car trip to Saratoga Springs, New York, with my boyfriend. It was a really stupid, enormous mistake: I collapsed in a little town in New Jersey and went into shock.



I got much sicker than I'd ever been before. I spent the next two or three years completed bed-bound. The vertigo started with great ferocity and it was hell on earth. I've never come back from that and that was ten years ago.



Writing the book took physical vitality out of you. But do you feel that the book fed you emotionally, psychologically, spiritually?
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Interview by Anne A. Simpkinson
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