Edit: Laura Hillenbrand tells me via Facebook that she’s never stopped speaking out about the illness. I have clearly missed those interviews, so I’ve corrected this entry.
Laura Hillenbrand – author of Seabiscuit and, most recently, Unbroken – is interviewed in Tara Parker-Pope’s “Well” blog at the NYT. The title – “An Author Escapes from Chronic Fatigue Syndrome” – is unfortunate and sort of misleading, but the interview is a good one. (Also: Don’t read the comments. The IT HAS TO BE LYME DISEASE! people are out in force. When all you have is a hammer…)
Ms. Hillenbrand has spoken publicly about ME/CFS before: Her award-winning essay “A Sudden Illness” appeared in the New Yorker in 2002.
I came upon that essay – which, by the way, took her six months to write – not long after I fell ill, and I’ve recommended it countless times. It is the best summation I’ve come across of so many aspects of the illness. I was struck, when I first read it, by how precisely alike our experience of the onset was. I, too, thought I had food poisoning. I also found it comforting, then, that my illness was not as severe as hers. And of course, in the intervening years, it has become so.
She does a beautiful job of conveying in “A Sudden Illness” what it was like in the years before the discovery of XMRV in late 2009. She lived many more of those than I did. It was a recipe for despair, to try to look for a cause or a reason. There was so much bad and conflicting information out there, and it was impossible to know what to believe.
I have had so many of the symptoms and experiences she describes therein – the weight loss, the mental confusion, the constant fever, the overwhelming vertigo, and the more frightening ones, too. I’ve had some dismissive doctors as well, but thankfully, by the time I fell ill, the illness had a name, if a trivializing one. Unfortunately, as she describes, after only a short time, I, too, knew more about it than my doctors.
Ms. Hillenbrand is certainly the best-known person we have with ME/CFS. I certainly understand not wanting to make her career about the illness – my blog title is No Poster Girl, after all – but the fame her talent and hard work has brought her means she has the power to make people take notice of it in a way few of us with it do.
Laura Hillenbrand and I have one other thing in common, but it’s a lucky trait, not an unlucky one: We are both married to philosophers! Her husband, G. Borden Flanangan, teaches at American University.
Anyhow, I’ve kept you long enough. Go read that essay!
No Poster Girl 
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This is a good book review, and there are many good points about Laura Hillenbrand, whom I admire for her perseverance in dealing with CFIDS, and for her writing two stellar books while ill.
I, too, have this disease, have had it for 25 years. I get a lot of hope by connecting with friends, reading, blogging on some great mystery readers’ websites and keeping my hand in with an optimistic group of people aiming for social change.
Yet often I am home and feel the world is going by and I’m right here, with my computer, tv and books, not even on the phone much. (I forget to turn the phone on, forget to check messages, and with my cell phone which I rarely use as I don’t go out much, I forget to charge it or take it with me.)
As long as I can connect with some people and feel part of the greater world, my mood is okay, although when this disease hits and I can’t go to something important to me, I get very disappointed.
Hope that you can find hope and enjoyment despite the disease’s symptoms.
It is great that both you and Laura Hillenbrand have spouses and happy relationships. That is so important.
Kathy, you’re so right about the value of connection. Life would be so much lonelier without my electronic link to the world. Thank you for being part of it.
Laura!
Just tonight finished Unbroken. I’m thinking, maserpiece as it gave me so much…history, your expressions, great appreciation for our servicemen. Your pages wouldn’t turn me loose…if only for 3 min. here and there, I slipped back into the journey that you told about in Louie’s life.
Now, for Seabiscuit. I know you will write more…thank you.
Kathryn
66, Indianola, MS
Hi Kathryn. I’m not Laura, but you can find her here: http://www.facebook.com/pages/Laura-Hillenbrand/165038523517866
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I am having days where I can’t move I need to know where to go to find out more info the websites are so many and just want to sell pills
I am inspired by the story of 2 people who out of their pain found each other and had a positive outcome. I am looking for my positive outcome. It gives me hope.