Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with the disease in a hundreds of interviews, and spent a year writing the award winning essay “A Sudden Illness,” which remains one of the best descriptions of ME/CFS I have ever read.
Which is why recent criticism of Laura Hillenbrand and her “failures” in advocacy makes me so angry.
Over the past several months, I’ve heard advocates saying that Laura should use the premiere of Unbroken to raise money for ME/CFS research. Advocates have suggested that she assign her “people” to conduct a public-awareness campaign about ME/CFS by leveraging coverage of the movie. And after the NBC/Tom Brokaw special about the film did not mention the name of Laura’s disease, criticism from advocates became more vocal and more pointed.
I asked Laura why the disease name was not included in the Brokaw special. She told me that she had actually discussed the disease extensively with Brokaw during their two-hour interview. Brokaw and the NBC staff were “immensely considerate about my illness and respectful of my limitations.” When she was given a preview of the script, she even took the time to explain to the fact-checker why the name ME is preferable to CFS. Ultimately, the disease name did not make it into the final version, but that is something beyond Laura’s control. The focus of the program was the film and Louie Zamperini’s story.
Laura’s work to bring public attention to this disease is evident in the New York Times profile article published last week. In extensive interviews with Wil S. Hylton, Laura described the details about living with ME/CFS and her resulting disability. The effects of the disease on her work and her writing process will leave no doubt in readers’ minds about the seriousness of ME/CFS.
Advocates consistently say that we need a celebrity spokesperson, like Michael J. Fox has been for Parkinson’s. But it is not easy to be public about having ME/CFS. Many people with this disease, not only celebrities, stay silent about it because of the stigma and because of everything that comes with being public about poor health. I’ve had people ask me if I’ve tried acupuncture, antivirals, homeopathy, immune modulators, meditation, Ampligen, positive thinking, exercise, weird diets, a warmer climate, or faith healing. I’ve had people criticize me for how I manage my disease and what I say about it. I find it difficult to deal with these sorts of questions and criticisms on the small scale of a personal blog. It’s hard to imagine what it would be like to deal with it from thousands of people like Laura does.
To all the advocates who have criticized Laura for not doing enough, let me be perfectly clear: Laura Hillenbrand is not your bitch. She does not work for you. She has no obligation to you.
Laura’s courage in speaking out has brought more mainstream attention to this disease and its impact on individual lives than anything else in the last ten years. Recognize that while Laura speaks the truth about her life with ME/CFS, this does not guarantee the media will use everything she says. That she has chosen to be so public about having ME/CFS is a gift to all of us. Perhaps we should say thank you, instead of insisting she owes us even more.
*Title inspired by a blog post by Neil Gaiman, in which he pointed out: “George R.R. Martin is Not Your Bitch.”