Author tells of battle with chronic fatigue syndrome

Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or CFS.

The illness, a devastating and little understood disorder, is characterised by overwhelming fatigue and various nonspecific symptoms like muscle pain, memory problems, sore throat, swollen lymph nodes, achy joints and unrefreshing sleep.

I recently spoke with Hillenbrand. Here’s our conversation.

Why have you started talking about your illness?

I had never been public about my illness at all before “Seabiscuit.” I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed.

People don’t understand this illness, and the name is so misleading. I realised I had this opportunity because I was going to be getting press attention for the book.

I’m going to talk about it because I can. Maybe that will save the next person from going through what I did.

Do you think it’s hard for people to understand how debilitating chronic fatigue can be?

This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working.

The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person.

I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading.

Fatigue is what we experience, but it is what a match is to an atomic bomb. This disease leaves people bedridden.

I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer.

Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.

When were you diagnosed with chronic fatigue syndrome?

I got it when I was 19, and I was diagnosed at 20 by the head of infectious disease at Johns Hopkins.

It was the most hellish year of my life. I went from doctor to doctor. I got very thin and lost 22 pounds in a month.

What were your first symptoms?

Like most people, it had a very sudden onset. I was an athlete and had always been healthy.

I was riding in a car on my way back from spring break my sophomore year of college and felt very nauseated. I guessed it was food poisoning.

I woke up a few days later, and I literally could not sit up, I was so weak. It hit me that fast. I had to drop out of school because I couldn’t make the walk to the classes.

It’s hard for me to imagine how you could have done the research and writing for two books during this time. How did you do it?

It’s a trade-off for me. While it’s really hard to do, at the same time, I’m escaping my body, which I really want to do. I’m living someone else’s life.

I get very intensely into the story, into the interviews and the research. I’m experiencing things along with my subjects. I have a freedom I don’t have in my physical life. Writing is a godsend to me. Without it I wouldn’t have anything.

Do you think having CFS influences your writing?

Because my life is so silent and so still, I think I’m able to get deeper into what I’m working on. My mind is willing to get out of here and go into there. It becomes such an intense experience.

Did you always want to be a writer?

At the time I got sick, I wanted to be a history professor. I was eight years old when I went across the street from my house to a fair and they always had a used book sale.

For a quarter I bought a book called Come on Seabiscuit. I loved that book. It stayed with me all those years. I was sick and housebound and looking for something I could write about. I wrote an article. I was part way through it and realised there was a huge untold story.

How did you do the reporting for the book?

Lots and lots of interviews, at least 100, and going through newspaper archives.

The family of Seabiscuit’s owner sent me 30 enormous leather scrapbooks.

I bought so many things on eBay — vintage things, magazines. I did many interviews with very, very old men.

Do you think your writing would be different if you didn’t have this illness?

I don’t remember what it’s like to feel well. I’m 43. I was 19 when I got sick. It’s a lifetime ago.

It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.

Have you thought about writing something autobiographical?

My husband wants me to. I just don’t know that I want to do that. I have to spend so much time being vigilant on my body and worrying about my body and suffering.

So much of my own autobiography would be about my health, and I don’t know if I want to spend my professional life thinking about that. I write to escape my circumstances.