Interview with Laura Hillenbrand in Washington Post

Discussion in 'Fibromyalgia Main Forum' started by healing, Jul 21, 2003.

  1. healing

    healing New Member

    (Note last paragraph!)

    The Long Shot
    Tuesday, July 22, 2003; Page HE02

    Laura Hillenbrand, author of "Seabiscuit: An American Legend," has suffered from chronic fatigue syndrome (CFS) for the past 16 years. Troubled by fevers and vertigo, she wrote some of the book lying on her back, jotting notes with her eyes closed.

    -Can you explain what it's like to have CFS?

    I always say that fatigue is to this disease what a match is to a nuclear bomb. Before I got sick, I had no idea the lengths to which you could get tired. When I am very sick, I go through "crashes," when for many hours a day I can't move my arms or legs, I can't sit up, get myself to the bathroom. I can't talk to anyone. All I can do is move my eyeballs. I lie there and hope I can keep breathing.

    -How do you respond to people who feel this isn't a real illness?

    It's quite maddening to have people trivialize it or make comments about it. What is more disturbing is that it gets a small amount of funding for research, in part because of the lack of understanding of what this disease really is.

    -How long were you sick before you were diagnosed with CFS?

    It took seven months to be diagnosed. I finally went to the head of infectious diseases at Johns Hopkins. I had been tested for everything -- I had MRIs and CAT scans -- and went from doctor to doctor trying to find out what was wrong. Emotionally, it was as bad as having the illness to have doctors be so condescending. . . . It's so arrogant for doctors to assume that if you run basic blood work and nothing conclusive shows up, then it must be in your head.

    I got sick when I was 19 and I was a sophomore in college. I am now 36. It never went away.

    -With "Seabiscuit" a bestseller and the movie due out this month, you've been under a lot of pressure. How are you coping?

    When I am not doing an interview I am lying down, eating well and trying to be relaxed as I can be. I leave the house only once or twice a week. Right now my life is dedicated to talking about this illness. For the first time, my being sick has a purpose. I can put it to use for something good.

    -- Wendi Kaufman

    © 2003 The Washington Post Company