A few years ago when completing my M.Ed. degree I chose eating disorder misinformation as the subject of my Masters thesis. This was important to me for several reasons, including that it involved several of my longstanding interests such as myths and misinformation (a typical skeptical subject); eating disorders (a subject I first became involved with when helping an ex-girlfriend deal with bulimia); and the news media (the subject of my 2003 book Media Mythmakers: How Journalists, Activists, and Advertisers Mislead Us).
I wanted to understand and explain the processes by which valid scientific information about these important health disorders got translated (and often mistranslated) between the clinical researchers and the public, mediated by eating disorder information clearinghouses (such as the National Eating Disorder Association, or NEDA), news journalists, and activist filmmakers (such as those who appear on prestigious PBS television shows such as Nova and Frontline).
Misinformation about eating disorders is not like misinformation about a car’s gas mileage, or the weather. Eating disorders are mental illnesses with potentially lethal consequences. Sufferers and their loved ones deserve accurate, up-to-date information about the diseases, but trusted sources of information–such as PBS television, ABC News, and even organizations such as the NEDA–turn out to be not so trustworthy upon closer inspection. This important topic has received little or no attention in the mainstream media, nor, to the best of my knowledge, in academia. Part of this may be due to the fact that the topic of eating disorder misinformation is multidisciplinary, and includes journalism, public education, media literacy, science literacy, medicine, and psychology.
Here I present one case study of flawed and misleading information about eating disorders presented in the respected PBS series Nova.
Case Study: PBS Nova Program
While many for-profit newsmagazines have covered issues relating to eating disorders, public television programs have also tackled the topic–and not necessarily any more accurately. For example on December 12, 2000, the acclaimed PBS series Nova (produced by WBGH Boston) aired a program titled “Dying to the Thin,” narrated by Susan Sarandon and written, produced, and directed by Larkin McPhee. Promotional literature for the program read, “Anorexia nervosa-the persistent aversion to eating-is the deadliest of all psychiatric disorders with its victims dying from malnutrition and other complications. According to a Mayo Clinic study, anorexia has been increasing by 36 percent every five years since the 1950s” (WGBH 2000). In order to illustrate the problem of anorexia, “Nova gains access to the intimate world of the New York City Ballet and the American Ballet Theater to explore the tormented lives of ballerinas who are expected to maintain their weight nearly 15 percent below the recommended ideal for their height–essentially an anorexic weight. In 1997 the dance world was stunned when a member of the Boston Ballet, Heidi Guenther, died at age 22 when her heart gave out. The cause appeared to be an eating disorder.”
While the motivations of the writers and producers were surely noble in wanting to help inform the public about anorexia nervosa, several aspects of inaccurate and misleading information about the disease are presented in this broadcast. The first is the claim that anorexia “is the deadliest of all psychiatric disorders” in which “its victims [die] from malnutrition.” In reality very few anorectics die from malnutrition because they are typically hospitalized, treated, and fed (sometimes intravenously if necessary). Actually starving to death is almost unheard of, though the lack of nutrition can exacerbate other pre-existing health problems.
One common assertion about eating disorders–and anorexia nervosa specifically–is that they have the highest mortality rate of any mental disorder. This statement takes several forms, such as “anorexia is the deadliest of mental disorders, with fatality rates exceeding those of any other” (Senman 2013) and “anorexia nervosa is the most lethal mental disorder of all, increasing risk of death six-fold as compared to healthy individuals” (Lein 2012). The Web site for the National Association of Anorexia Nervosa & Associated Disorders (ANAD) offers a more nuanced perspective on the issue of anorexia mortality: “Although eating disorders have the highest mortality rate of any mental disorder, the mortality rates reported on those who suffer from eating disorders can vary considerably between studies and sources. Part of the reason why there is a large variance in the reported number of deaths caused by eating disorders is because those who suffer from an eating disorder may ultimately die of heart failure, organ failure, malnutrition or suicide. Often, the medical complications of death are reported instead of the eating disorder that compromised a person’s health” (ANAD 2013). That being said, the rates given (as cited in Crow 2009) were 4% for anorexia nervosa; 3.9% for bulimia nervosa; and 5.2% for EDNOS (Eating Disorder Not Otherwise Specified).
Second, the claim that “anorexia has been increasing by 36 percent every five years since the 1950s” is both factually inaccurate and nonsensical (if anorexia incidence had been increasing exponentially every five years since the 1950s, the rate would be far higher than the 1% incidence research has established; see Note 1). This Nova statistic has been widely repeated by others (see, for example, Parsons 2002). Once again we see a systemic failure of those writing about anorexia and other diseases to consult original sources and verify the accuracy of information about the disease.
Ballet Dancers as Anorexics
Not only is the incidence of anorexia misreported (or misleadingly reported), but the example that the producers chose to illustrate anorexia is also misleading. The Nova program does not explicitly state that the ballerinas they interview are necessarily mentally ill, but it does clearly suggest that there is a strong, proven, and self-evident connection between anorexia nervosa and ballet dancers. However that connection is far from clear.
One recent study, for example, compared female ballet students between the ages of 12 and 21 to similar-aged females in the general population and found no difference in the incidence of anorexia specifically, nor eating disorders generally. “The prevalence of eating disorders and several risk attitudes and behaviours were similar in the dance students and the female adolescents from the general population…. Depressive symptoms were associated almost exclusively with experience of stressors and aversive situations. Dance school students do not necessarily present a greater risk of ED than other girls of the same age” (Toro et al. 2009). This finding replicated other research concluding that ballet dancers do not show a markedly increased incidence of eating disorders as compared to the general public.
Writing in the Handbook of Eating Disorders, researchers Jorunn Sundgot-Borgen, Finn Skarderud, and Sheelagh Rodgers (2003) note that “Abraham (1996) examined the eating patterns of 60 young female ballet dancers and concluded that 1.7% had anorexia nervosa, and a further 1.7% had bulimia nervosa, while overall 12% had some form of eating disorder” (p. 387). Some studies suggest anorexia incidences among ballet dancers as high as 6.9% and overall ED as high as 83% (see, for example, Ringham et al. 2006), though such studies typically suffer from a very small sample size. There is general agreement that ballet dancers likely exhibit a slight
increased prevalence of anorexia: compare the incidence of around 1.7% for ballet dancers with up to 1% for the general population. Thus while the Nova program suggests that anorexia nervosa is typical of ballet dancers, the fact is that it is distinctly atypical–about 98% of ballet dancers do not fit the criterion for diagnosis of that mental illness.
A survey of the literature regarding the incidence of anorexia among professional ballet performers is beyond the scope here, but the larger point glossed over by the Nova program is that by any measure ballet dancers are distinctly atypical of sufferers of anorexia nervosa and other eating disorders. Picking ballet dancers as an illustrative example to inform the public about anorexia is like picking sumo wrestlers as an illustrative example to inform the public about obesity. Both are highly specialized arts and sports demanding unusually extreme body sizes for peak performance; those athletes’ stories may make dramatic and compelling television, but bear little resemblance to what most eating disorder disease sufferers experience on a daily basis. In a discussion of anorexia rates among athletes and dancers, researchers caution that “Athletes and dancers constitute a unique population, and special diagnostic considerations should be made when working with these groups” (Sundgot-Borgen, Skarderud, and Rodgers 2003, 386).
Indeed, it has been argued that low weight–and even anorexia itself–is not necessarily maladaptive: “though AN can be fatal in humans, it is important to recognize that it is by no means uniformly so. The lifestyle assumed by sufferers of AN can lead to good functioning as fashion models, ballet dancers, and athletes” (quoted in Thomas, Keel, and Heatherton 2011). Yet focusing on ballet dancers as obviously representative of eating disorders and anorexia is a misleading trope of many television programs and even films (see, for example, Roberts 2009). Focusing on ballet dancers and fashion models as representative or symbolic of anorexia nervosa sufferers misleads audiences about the disease because most women are not ballet dancers (nor do they have careers that require such an extremely lean physique), and because most ballet dancers don’t have anorexia.
Dying to Be Thin writer/producer Larkin McPhee tries to make a comparison between anorexia and “an anorexic weight,” as if a mental illness and a specific weight are identical. This is not only illogical but exhibits a profound misunderstanding of anorexia; there is no such thing as an “anorexic weight,” any more than there is a “bipolar weight” or an “agoraphobic weight.” That phrase is nonsensical. There are many very thin people who do not have anorexia, and there are many overweight people who have eating disorders (such as bulimia).
Further research revealed that even the fatal cautionary tale that the Nova program cited, the death of dancer Heidi Guenther, wasn’t quite true; though the coroner could not rule out the possibility that her low weight might have played some unknown role in her death, one investigative journalist noted that “forensic pathologist John Hain concluded that Heidi ‘died as a result of a fatal ventricular arrhythmia [loss of life-sustaining heart rhythm]’ of unknown cause. A microscopic analysis of heart tissue, the coroner noted, had found fatty deposits in the wall of her right ventricle, a rare, sometimes genetic condition that can cause irregular heart rhythms.” Guenther’s father had also died of a heart attack at a young age. Boston Ballet spokesman John Michael Kennedy emphatically stated that Guenther’s death “is not a story about eating disorders. She had a genetic heart condition. There was no way they could know if any emotional or dietary disorder may have played a part in her death. Just because someone is thin doesn’t mean they are unhealthy. That is an important thing to remember” (Baker 1999).
Though Guenther clearly had an eating disorder (likely bulimia–not anorexia, which was the focus of the Nova show), it’s not clear how or if it contributed to her death. There are tens of thousands of ballet dancers, yet their deaths are very rare; if merely being in that profession dramatically increased their risk of death, we would expect to hear of such deaths much more often (the news media are not shy about doing stories on anorexia deaths among celebrities, actors, and athletes). The coroner’s report on Guenther’s death was released at least a year before the Nova episode was broadcast, so it’s not clear why it was not included–unless the producers chose to leave it out because it undermined (or at least questioned) their premise. In either event, this PBS show contributed to misinformation about eating disorders.
Dying to Be Thin even repeated as true the historical story of the vomitoriums, rooms where ancient Romans allegedly went to vomit between meals, bulimic-style, so that they could return to a feast and eat more. This is in fact a well-documented myth; vomitoriums were an architectural feature of Roman theatres allowing spectators to enter and exit quickly and have nothing to do with eating or eating disorders. That this popular myth--debunked for decades–is presented as historical fact on this Nova program about anorexia is both troubling and revealing.
In Part 2 I will explore some of the reasons for why the flawed Nova writers got the information wrong and, tragically, helped spread misinformation about anorexia nervosa and other eating disorders.
Note 1. The most reliable estimates place the average prevalence rate for young females is 0.3% for anorexia nervosa and 1% for bulimia nervosa (van Hoeken, Seidell, and Hoek 2003, 11), and for anorexia specifically “A mean incidence in the general population of 19/100,000 a year in females and 2/100,000 a year in males has been estimated from 12 cumulative studies” (Treasure and Schmidt 2004). In other words, out of every 100,000 females in a given year, 19 of them will develop new cases of anorexia, an incidence of 0.00019.
Abraham, S. 1996. Characteristics of eating disorders among young ballet dancers. Psychopathology 29:223-229 (DOI:10.1159/000284997).
Baker, Ken. 1999. Heidi Guenther’s short, tragic life-and death. San Francisco Chronicle April 4. Available at https://www.sfgate.com/magazine/article/Heidi-Guenther-s-short-tragic-life-and-death-3490764.php.
Best, Joel. 2001. Damned Lies and Statistics: Untangling Numbers From the Media, Politicians, and Activists. Berkeley, California: The University of California Press.
Crow, S.J., C.B. Peterson, S.A. Swanson, N.C. Raymond, S. Specker, E.D. Eckert, and J.E. Mitchell, J.E. 2009. Increased mortality in bulimia nervosa and other eating disorders. American Journal of Psychiatry 166, 1342-1346.
Erwin, Patricia. 2013. E-mail correspondence with the author, March 8.
Lein, Stefanie. 2012. A body to die for: The deadly side of eating disorders. Eatingdisordersonline.com. Available at https://www.eatingdisordersonline.com/lifestyle/eating-disorders/a-body-to-die-for-the-deadly-side-of-eating-disorders.
Luzer, Daniel. 2013. No one really reads academic papers. Washington Monthly, February 19. Available at https://www.washingtonmonthly.com/college_guide/blog/academics_do_a_lot_of.php.
National Association of Anorexia Nervosa and Associated Disorders. 2013. Web site available at https://www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics, accessed February 18, 2013.
Parsons, Kate. 2002. Anorexia nervosa and our unreasonable perceptions. In Recognition, Responsibility, and Rights: Feminist Ethics and Social Theory, Robin Fiore, Ed. New York: Rowman & Littlefield Publishers, p.
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Ringham, Rebecca, Kelly Klump, Walter Kaye, David Stone, Steven Libman, Susan Stowe, and Marsha Marcus. 2006. Eating disorder symptomatology among ballet dancers. International Journal of Eating Disorders 39:6 503-508 2006-DOI 10.1002/eat.
Roberts, Darryl. 2009. America the Beautiful. Documentary film. Sensory Overload Productions.
Senman, Suna. 2013. College-Age disease calls for attention. Huffington Post.com, February 27. Available at https://www.huffingtonpost.com/suna-senman/eating-disorders_b_2765347.html.
Simkin, M.V., and V.P. Roychowhurdy. 2003. Read before you cite! Complex Systems, 14:269-274.
Sundgot-Borgen, Jorunn, Finn Skarderud, and Sheelagh Rodgers. 2003. Athletes and dancers. Chapter 24 in Handbook of Eating Disorders, 2nd Ed, (Treasure, Schmidt, and van Furth, eds.)
Thomas, J.J., P.K. Keel, and T.F. Heatherton. 2011. Disordered eating and injuries among adolescent ballet dancers. Eating and Weight Disorders Vol. 16: e216-e222. Available at https://www.dartmouth.edu/~thlab/pubs/11_Thomas_etal_EWD.pdf.
Toro, Josep, Marta Guerrero, Joan Sentis, Josefina Castro, and Carles Puertolas. 2009. Eating disorders in ballet dancing students: Problems and risk factors. European Eating Disorders Review, The Journal of the Eating Disorders Association, 17:40-49.
Treasure, Janet, Ulrike Schmidt, and Eric van Furth, eds. 2004. Handbook of Eating Disorders, 2nd Ed. Hoboken, New Jersey: John Wiley and Sons.
Van Hoeken, Daphne, Jacob Seidell, and Hans Wijbrand Hoek. 2003. Epidemiology. Chapter 2 in Handbook of Eating Disorders, 2nd Ed, (Treasure, Schmidt, and van Furth, eds.)
WGBH. 2000. Dying to be Thin. Nova television program. Airdate December 12 on the Public Broadcasting Service.