What Price Glory?
Laura Hillenbrand, author of 'Seabiscuit,' discusses her Chronic Fatigue Syndrome and how the book affected her life.
BY: Interview by Anne A. Simpkinson
Right now my exhaustion is bad enough so I'm 100% housebound. I've only been out of the house three times since my book came out two months ago.
I have vertigo. Vertigo makes it feel like the floor is pitching up and down. Things seem to be spinning. It's like standing on the deck of a ship in really high seas.
|No matter what happens with this illness, I think it is possible to carve out a dignified and productive life from it.|
Almost everybody gets night sweats and chills. I've had a fever for 14 years. Some people have very severe joint pain and muscle pain.
You've said that the first year you were sick was very tough, mainly because you couldn't get a diagnosis. Talk about that first year.
It was extremely frightening. I lost 22 pounds in the first month and I didn't have that weight to lose. I lost all my vitality. My hair started falling out. I got sores all over my mouth and my throat. I was running fevers all the time. I would go to doctors and they didn't know what it was, and their inclination was to assume that it was psychological or that it was an effort to get out of doing school work. It was really enraging and upsetting because when doctors don't support you, you lose the support of family and friends, just about everyone.
Because they begin to doubt you?
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.