Discussed in this article

When Illness Goes Public: Celebrity Patients and How We Look at Medicine
 

Barron H. Lerner
Johns Hopkins ~ 2006 ~ 352 pp. 
$25.00 (cloth)

Email Updates

Enter your email address to receive occasional updates and previews from The New Atlantis.

 

Support Our Work - Donate to The New Atlantis

Sick and Famous 

Christy Hall Robinson

In August 2007, the actor Owen Wilson was hospitalized after apparently trying to take his own life. The media coverage of his hospitalization was swift and, once the reason for it was leaked, unrelenting. Some people undoubtedly had qualms about invading the privacy of a man at the lowest point in his life, but the attention on Wilson’s suicide attempt and subsequent medical care and the probing speculation about his mental state could not have been surprising to anyone familiar with the workings of the contemporary news media.

In his book When Illness Goes Public, Barron Lerner, a physician and professor of medicine and public health at Columbia University, discusses the increase in media and general interest in public figures’ medical concerns, exploring the way public attention to celebrity illness and medical issues has evolved in the last seventy-five years. Lerner offers a thought-provoking, if not comprehensive, study of this modern phenomenon.

In the early years of the twentieth century, regardless of a person’s prominence, the subject of illness and disease was deeply personal and considered neither appropriate for reporting nor newsworthy. For instance, as Lerner describes, even in the 1930s when Lou Gehrig — the “Iron Horse” of the New York Yankees and one of the first celebrity patients in the United States — was diagnosed with amyotrophic lateral sclerosis (ALS), the details of his decline and subsequent death in 1941 were kept relatively quiet. Media coverage was respectful and fairly unobtrusive; there were no paparazzi peeping through Gehrig’s shrubbery hoping to snap a shot of the faltering ballplayer. Considering the rapid and exhaustive coverage of more recent celebrities’ health crises, it is clear that the American public’s perspective on celebrities’ medical conditions and right to privacy has radically changed.

Lerner argues that this shift, beginning with Gehrig, occurred in stages over the course of many celebrity illnesses and in conjunction with the rise of the contemporary celebrity culture in America. “Despite their seemingly eventful lives,” Lerner writes, “celebrities, just as other Americans, spent most of their time doing ordinary things. Gradually, these seemingly mundane activities came to be seen as having entertainment value. One such activity was getting sick.” The entertainment value of sick celebrities meant there was a significant demand for news coverage from the American public — a demand that the media rose to meet.

It was often “the ordinariness of famous patients — and their loved ones — that made their stories so compelling for non-famous Americans confronting the same medical and emotional issues,” Lerner says. While this may be true, the media, by the manner in which reporters and writers chose to relate stories, contributed enormously to enhancing the inherently compelling quality of celebrity illnesses. For example, when writing about Gehrig’s diagnosis, decline, and death, reporters in the 1930s and early 1940s invoked the image of a soldier to represent Gehrig to the public, portraying him as a hero bravely fighting a battle against his disease — an analogy so common now after decades of use as to be second nature, but one that powerfully resonated with the American public in the years following Gehrig’s death as the United States entered World War II. “Fighting disease had become the moral equivalent of fighting war,” Lerner says.

This analogy eventually assumed a life of its own. Over time, the idea of “fighting” a disease took on a specific form for celebrity patients: advocacy. Nowadays, the expectation surrounding celebrity patients is that they will use their fame, influence, and wealth to advocate for research and increase the public’s awareness of their diseases, as well as offer their stories as inspiration for ordinary people. In the 1930s, no one considered it odd that Gehrig did not step into the role of national spokesman for ALS, lobbying the government for research funds to help develop a cure for the disease. There was no expectation that Gehrig would turn to advocacy.

Lerner’s primary example of contemporary celebrity-patient-turned-advocate is cancer-survivor and seven-time Tour de France winner Lance Armstrong, whom Lerner discusses in the book’s introduction and conclusion. Comparing Gehrig and Armstrong suggests that the rise of celebrity disease advocacy involved a significant tradeoff: to garner the clout and legitimacy required to advocate on behalf of a disease, celebrities would have to sacrifice their privacy and reveal the details of their personal suffering and struggles to the glare of the press. Mapping this rise in media attention to celebrity illness and the concurrent rise of celebrity advocacy, Lerner tells the stories of thirteen famous patients, beginning with Gehrig and including former Secretary of State John Foster Dulles; Chicago Bears fullback Brian Piccolo; movie actors Steve McQueen and Rita Hayworth; tennis star Arthur Ashe; and Lorenzo Odone, the inspiration for the film Lorenzo’s Oil.

In telling many of the patients’ stories, Lerner highlights a common feature of media versions of celebrity illness — the retrospective oversimplification of events, choices, and points of view. “Attracting and keeping readers and viewers through oversimplifications remained the usual practice for media outlets wishing to stay in business,” he writes. In news stories, articles, and especially movies about celebrity patients, the idea of destiny figures prominently; since the outcome is predetermined, the story’s conclusion shapes the tone of the narrative, giving it “a sense of inevitability and fate that was not present at the time.” This emphasis on fate, Lerner argues, has factored hugely in the public response to and understanding of celebrity illness and illness in general, both for better and for worse.

Lerner rightly recognizes that this oversimplification is problematic and often leads to several versions, some directly contradictory, of the same story. Consequently, in his own accounts, he carefully lays out the known facts of each case at the beginning of each patient’s respective chapter — along with an excess of fairly interesting but irrelevant biographical information — and offers repeated warnings about viewing stories through the lens of fate. However, he occasionally and abruptly sheds this recognition and, heedless of his own advice, makes broad, retrospective statements. For instance, in the chapter on Life magazine photographer Margaret Bourke-White’s Parkinson’s disease, Lerner boldly claims: “Passivity was never really an option for Bourke-White.” Was it not? What Lerner seems to ignore is that Bourke-White could certainly have chosen passivity — he only says she could not have because she did not. If anything, Lerner’s slip proves the dangerous, magnetic draw of casting stories in this light.

Ultimately, Lerner seems more interested in setting the record straight than in making critical assessments of the cases individually or, more interestingly, as a group. The growing focus on celebrities’ medical health and subsequent turn to advocacy is fascinating and worth examining, and Lerner rightly points out that celebrity illness narratives and advocacy helped to focus attention and funding on certain areas of medical research. “Despite...concerns and transgressions,” Lerner concludes, “the stories of sick celebrities have resulted in far more benefits than drawbacks.” But he misses the opportunity to explore some obvious and compelling questions that his study raises: Why does a celebrity’s experience lend authenticity to marketing a cure? Did celebrities’ experiences with various doctors and treatments influence the way ordinary people approach their own medical decisions?

This last question Lerner does engage on some level, albeit unsatisfactorily, by examining the shift in the nature of doctor-patient relationships during the latter part of the twentieth century. Until relatively recently there was rarely full disclosure between doctors and patients. For example, it is unclear exactly when Lou Gehrig himself understood that his condition was terminal. Paternalism was the accepted professional disposition of physicians toward their patients during that era. Doctors often made decisions about treatment without consulting or even informing the patient — a far cry from today, when average patients become well-informed about their diseases, seek out second and third opinions, and might even choose from an array of conventional and alternative treatments. Lerner traces this progressive change, moving from Gehrig to the opposite end of the spectrum: Lorenzo Odone’s parents, who, though neither was a medical doctor, searched doggedly for a cure to the terminal, neurologically degenerative disease their son was diagnosed with in 1984. The 1992 movie Lorenzo’s Oil, starring Susan Sarandon and Nick Nolte, is the highly dramatized — and, as Lerner points out, partially fictionalized — Hollywood version of the story.

As the book’s subtitle, Celebrity Patients and How We Look at Medicine, indicates, Lerner is arguably more interested in celebrity patients as a foil for examining the developments in the way average people approach medicine than he is in the attention celebrity patients receive. Celebrities undoubtedly pushed the medical envelope, but Lerner does not ever fully show his hand: Is he using celebrities as a lens for looking at a shift in doctor-patient relationships that would have occurred without their influence? Or does he consider celebrities the catalysts for the changes? Lerner does not clarify the connection between celebrity patients and the evolution of doctor-patient relationships.

In many of his chapters, Lerner quotes from letters that people from all over the United States wrote to famous patients after reading or watching media or Hollywood accounts of their illnesses. It is certainly interesting, and relevant to Lerner’s study, to see the kind of letters people wrote, but Lerner devotes an unnecessary and even tedious amount of attention to this correspondence. Where a summary of the tone and content of a group of letters would suffice, Lerner subjects his readers to full quotes from the missives, meticulously including names and locations of correspondents. More frustratingly, Lerner does not examine the implications of the letters’ intriguing religious and homeopathic elements — they are fraught with confidence in God’s healing power and a staunch belief in various orthodox and unorthodox treatments. Did celebrities, by showing the way, help give average patients the courage to be less passive about their own medical care?

When Illness Goes Public is an engaging and thoughtful book, and Lerner piques the reader’s interest on many levels. But he ultimately neither reaches nor helps the reader attain a satisfying conclusion to the many questions the volume raises. And, for unclear reasons, he ends the book with the story of Lorenzo Odone. Although he informs the reader that Lorenzo was still alive in 2006 at the book’s publishing, the significant amount of time that has elapsed since the dramatic elements of Lorenzo’s story took place makes the book seem as if it were published a decade ago. This choice precludes an examination of more recent examples, and Lerner’s study of celebrity illness is the weaker for it. His conclusion is thus emblematic of the failings of the book as a whole: it leaves too many questions unexplored and ultimately does not capitalize on its potential.


Christy Hall Robinson is an editorial assistant at the American Enterprise Institute.

Christy Hall Robinson, "Sick and Famous," The New Atlantis, Number 19, Winter 2008, pp. 113-117.