Author of the acclaimed book Seabiscuit shares a defining experience in her life with CFS.
Laura Hillenbrandís Defining Moment
By Laura Hillenbrand
When CFS came crashing down on me in 1987, It seemed that there was nothing it did not take. But for me, the cruelest twist was not what it stole, but what it left behind.
Virtually unstudied and invisible to standard diagnostic test, CFS existed in a vacuum of understanding. In the absence of easy answers, an arrogant, irrational assumption was made. If extant tests revealed nothing, the problem wasn’t that medical knowledge was limited, it was that patients weren’t really sick.. CFS, it was decided, was simply hypochondria or fakery. In the horrifying spring of 1987, I learned that I was facing not only a catastrophic disease, but a poisonous stigma as well.
Like so many other patients, I felt the stigma every day. I was called “lazy” and “a deadbeat” and accused of playing for attention and pretending to be ill. From doctors, acquaintances, even relatives, I received not compassion and care but hostility, derision, disgust, dismissal. When I asked for help, I was excoriated for troubling other people just so I could enjoy being waited on. Intellectually, I understood that my illness was real, and that I was blameless. But emotionally, it was impossible to be steeped in scorn without absorbing it. CFS took everything from me, and in its place left grinding, relentless shame. I was ashamed of myself, ashamed of the failure of my body, ashamed of my helplessness.
That shame was ruinous. I became so afraid of encountering contempt that I avoided seeking help even when I desperately needed it, compounding my suffering exponentially and leading me into relapses. When I couldn’t avoid asking for help, I felt overwhelmed by guilt, especially when the assistance I requested was given with bitterness. Over and over again, I drove myself to collapse to prove that I wasn’t malingering. Worst of all, I felt so suffused with shame that I couldn’t offer my body the compassion that it needed to heal.
My disease became my dirty little secret. Whenever I could hide it, I did, fearing that disclosure would bring humiliation. When I began to write professionally, working almost entirely from bed, I hid my illness from all but my most trusted editors. I revealed it to only one interviewer, a woman whom I trusted enough to explain why I couldn’t accept her invitation to ride her horse. “CFS?” she said. “I thought that was all just made up.” When I first spoke to the man who would become my editor at Random House, I said nothing about my disease, sure that he would never agree to work with me if he knew my secret. It was my literary agent, who knew I had nothing to be ashamed of, who eventually told him.
As I prepared for the release of my book, Seabiscuit: An American Legend, I stood at a crossroads. A book tour was customary, but far beyond my capabilities. I told Random House’s publicist about my disease and the impossibility of traveling even very short distances. Interviewers would have to come to me. My publicist said that the media was going to need an explanation. Was I wiling to go public with my illness?
The prospect was terrifying. It seemed possible, even likely, that I would meet with the same derision that I had faced from the beginning, only this time it would be public, and on a far greater scale. But as scary as it was, it was also a golden opportunity to educate the world about a disastrously misunderstood disease. I had to say yes. I penned a short essay explaining my illness and the obstacles it had created as I wrote my book, and my publicist included it in my press packet. I held my breath.
The next three years were a whirlwind. I did hundreds of interviews, and it seemed that every journalist wanted to talk as much about CFS as about Seabiscuit. At first, telling my story was intensely uncomfortable. But my perspective quickly changed. I began to focus on the fact that I was speaking not for myself, but for countless other people who were enduring CFS. Though I was bedeviled by the sense that my own illness was unseemly, when I thought of all the other people whose lives had been stolen from them through no fault of their own, and whose suffering was exacerbated by an unjustified stigma, all I felt was compassion. That change in perspective freed me, and suddenly all I wanted to do was fight for understanding. I became more and more involved with CFS advocacy. I spent a full year writing a lengthy article for the New Yorker, telling my story with the raw honesty that I had never been able to muster before. The experience was transforming. All of my useless years of suffering now had a meaning, a purpose. I could use them to help someone else.
The epiphany came in an unlikely way. My struggle with CFS was the subject of a story on 20/20. Just after the show aired, a couple of “shock jock” radio deejays in a major city mocked my illness on the air, suggesting that it was faked. Here was the thing I had feared, but my reaction startled me. I didn’t feel humiliated. To my astonishment, I didn’t even feel the slightest bit ruffled. I thought the deejays foolish and depraved, but the derision no longer found a home in me. I shrugged it off and forgot about it.
The sense that my illness was disgraceful was finally gone, thanks to the work of advocacy. It is the greatest paradox of my experience with CFS that public exposure, the very thing that I had avoided because of the shame it triggered, turned out to be the one thing I needed to shed that shame forever.
Laura Hillenbrand is the author of Seabiscuit: An American Legend, a book she wrote lying in her bed, too ill with CFS to remain upright. She is also the author of a New Yorker essay detailing her experience with CFS, which went on to win the 2004 National Magazine Award for the best essay of the year. Hillenbrand was named one of Glamour magazine’s 12 Women of the Year for 2003, while Vogue named her one of its Extraordinary Women of 2003.
Editorís note: This essay originally appeared in the CFIDS Associationís special publication Defining Moments: 20 Years of Making CFS History.First-person historical perspectives, a personal essay by Seabiscuit author Laura Hillenbrand, a CFS timeline and countless photographs fill this 61-page publication. Click here to get your own copy now.
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