May 2007

Web of Controversy — Investigating
“Pro-Eating Disorder” Sites
By Jessica Setnick, MS, RD/LD
Today’s Dietitian
Vol. 9 No. 5 P. 34

The Internet isn’t the world’s safest playground—and Web pages that seemingly promote, even glorify, thinness may be real cause for concern.

Critics have labeled them “accomplices to suicide” and founders have heralded them as “supportive havens.”1 Behind all the media hoopla, what do you need to know about so-called pro-eating disorder Web sites to best serve your clients?

A Look at Content
The truth is that few of these sites contain original content. Many are small, personal Web sites or Weblogs with content lifted from other related sites. Much of the content can be found elsewhere on the Internet, including weight loss-related Web sites that do not associate themselves with pro-eating disorder sites.

Many of the Web sites feature photos of underweight or emaciated women, dubbed thinspiration. A minority are personal photos of individuals photographing themselves in a mirror; the vast majority are paparazzi shots of celebrities, photos taken during fashion shows, and models in advertisements—all of which are readily available in major magazines.

The singularity of focus is what makes the pro-eating disorder Web sites so unique. Instead of four or five pages of emaciated, elongated, computer-manipulated models spaced out in a magazine among editorial content, these sites stockpile these images exclusively. To curious observers, rather than having a temptation to emulate these images, more likely their reaction may be surprise at how absolutely commonplace they are. In other words, the majority of these images are by no means underground, subversive, or secret. They are merely purloined from the many media images we encounter on a daily basis without even trying.

There is one style of thinspiration that is unique to pro-eating disorder Web sites: photos portraying underweight individuals, always girls or women, participating in questionable behaviors, such as kneeling over a toilet, exercising, or showing off their skeletons. The more disturbing Web sites include captions such as “I love your bones,” indicating that such appearances are desirable.

Many Web sites include language insisting that their goal is to “offer support,” a “safe haven,” or a “nonjudgmental” forum for those with eating disorders. It is unclear whether these statements are merely a standard disclaimer to cover a more devious and dangerous purpose or whether those who develop the sites are merely as confused about eating disorders as those they claim to serve.

For example, The House of ED, whose home page motto is Latin for “What nourished me, destroyed me,” provides on one page The Diet Coke Diet:

And on another page, there is substantial information on first aid and seeking help for self-injury.

Some self-described anorexia tips are much like what you would find on a reputable weight loss site—for example, detailed directions on how to eat small portions, keep a food diary, use clothes to monitor weight loss instead of the scale, and avoid refined foods. Some sites include a body mass index calculator, restaurant guides, suggestions for how to get through a weight loss plateau, and distractions to keep you busy when tempted to eat. Out of context, none of these would be surprising to a dietetics professional; in fact, many use these same tools on a daily basis with clients.

“Think of all the positive changes you can experience by losing weight.” This quote is not, as you might suspect, from a pro-eating disorder Web site but in fact from the weight loss page on about.com. A quick review of standard weight loss Web sites finds few specify that before attempting weight loss, one should ensure that weight loss is recommended. In other words, a normal-weight or underweight person who nevertheless wants to lose weight could find a large portion of the information on pro-eating disorder Web sites without ever finding a pro-eating disorder Web site.

Viewers Beware
So what is unique about pro-eating disorder Web sites? Along with flippant, directionless, but possibly influential blurbs such as “ednos, the smart choice,” a small but important minority of the information on some pro-eating disorder Web sites is clearly harmful if followed.

In addition to the philosophical tips, “An Anorexic Mind” includes lists of thinspirational books and music, as well as tips to burn calories, deny hunger, and hide unhealthy behaviors. Nowhere does it list the dangers of anorexia, which we all know to be damage to every major organ system in the body, permanent bone loss, and eventual death.

And herein lies the major concern with pro-eating disorder Web sites: With a few exceptions, they fail to address the negative consequences of eating disorders, much less the actual dangers to life and limb. If negative health effects are mentioned at all, they are minimized or factually misrepresented. One site insists that ketosis is a desirable metabolic state, menstrual irregularities do not have serious effects, and although “lethal heart rhythms” is listed as a complication of bulimia, somehow “there are few major health problems” for a “bulimic of normal weight.” Implying that eating disorders are a handy and safe method for weight loss is clearly incorrect and irresponsible and could prevent someone who is already in danger from seeking medical care and treatment.

Hide and Seek
The Web sites themselves are well hidden, in part due to a crackdown by free Web hosts at the request of the National Eating Disorders Association (NEDA) on the grounds that they violate the terms of service by being harmful to minors. (See NEDA’s stance on pro-eating disorders Web sites in the sidebar.) Some sites have moved to private hosting, and some have moved to solely bulletin board status. Others appear to have disbanded but may have morphed into another format or site. The names of the Web sites cannot be merely typed into a browser. In most cases, they must be linked to from another site, as the full site name is usually long and/or coded. If you are interested in perusing these sites, typing “pro ana” into your search engine is far less helpful than typing “pro ana” into the search engine at xanga.com, for example. Likewise, typing “thinspiration” into a standard search engine will provide less pro-eating disorder imagery than typing “thinspiration” into youtube.com.

Although some media reports have suggested that pro-eating disorder sites have legions of loyal fans and are responsible for hundreds of new eating disorder cases, there is no evidence of that on the pro-eating disorder Web sites themselves. There is no bragging about success at “converting” new followers and no accounting of new members seduced. To the contrary, many sites appear to be one-woman creations, even those (eg, Anorexia Nation) whose names imply a voluminous following.

The Power to Influence?
Because the mechanism(s) of eating disorder development are currently not well-understood, it is difficult to determine the impact of anything on the incidence or prevalence of eating disorders, including pro-eating disorder Web sites.

We do know that for most people with eating disorders, a desire for weight loss preceded the development of the disease, and many patients with eating disorders implicate a diet or other weight loss attempt as the immediate predisorder trigger. There are many cases in which involuntary weight loss triggered an eating disorder; however, it appears that in the majority of these cases, weight loss was considered desirable, even if it was not voluntarily attempted. Long before pro-eating disorder Web sites existed, mainstream weight loss media—diet books, diet programs, diet Web sites, and so on—have been implicated as triggers by patients with eating disorders. It is weight loss itself that triggers the eating disorder, regardless of the mechanism of action or education.

Even the pro-eating disorder Web sites themselves seem to be ambivalent about the role they play in the development of eating disorders. Some pro-eating disorder Web sites insist in their content that they aren’t doing anything wrong, as no Web site can cause anorexia. Other sites include a disclaimer or warning on the home page indicating that images within may be “triggering” to some viewers.

Anorexics Unite attempts to cover all the bases in its homepage “Mission Statement”:

The House of ED provides the following “Disclaimer”:

For someone who is intrigued or interested, it seems unlikely that such a disclaimer would discourage him or her from proceeding. On the other hand, someone with an eating disorder who is truly attempting to recover may appreciate the warning that triggering material is waiting inside. It is too bad the equally triggering highway billboards and fashion magazines don’t provide the same courtesy.

The fallacy behind the hype that pro-eating disorder Web sites cause eating disorders is that one simply cannot choose to develop an eating disorder. Anorexia, bulimia, and other eating disorders are physiologic brain disorders of multifactorial origin. The exact mechanisms that cause them remain unclear, but we do know that one cannot choose to have an eating disorder, much the same way one cannot choose to have cancer. Many people undertake diets; arguably only a portion develop eating disorders. One pro-eating disorder Web site offers this comparison: “A man can shave his head and look bald, but he is still not bald.” Some people force themselves to throw up once or twice, and then walk away without developing bulimia.

On the other hand, no one knows what makes an individual susceptible to eating disorder development, so potentially everyone is at risk. The House of ED, site of violent contradictions that it is, states that every person in a developed country could reasonably be considered in danger of developing an eating disorder. In other words, it is impossible to predict the level of impact, if any, that a pro-eating disorder Web site (or any other media literature or image) will have on an individual’s eating disorder propensity.

An adult who is comfortable with his or her weight but is curious about the pro-eating disorder movement might not be influenced by a pro-anorexia or pro-bulimia Web site. However, an impressionable teen who is interested in “fitting in” by losing weight may find the information fascinating and inspirational. In other words, the effect of a pro-eating disorder Web site is likely a result of the user’s mindset prior to viewing the site. This leads to the conclusion that if the site viewer comes to the pro-eating disorder site predisposed or susceptible to an eating disorder, the information on the site may contribute to the further development of the disease.

Only one study to date has assessed the influence of pro-eating disorder sites on patients with eating disorders, and none has analyzed their potential influence on creating eating disorders. In the one available study, “Surfing for Thinness: A Pilot Study of Pro-Eating Disorder Usage in Adolescents with Eating Disorders,” patients who frequented pro-eating disorder Web sites required longer treatment and more hospital admissions.2 Future research might assess the impact of pro-eating disorder Web sites on Internet users without eating disorders, study the long-term effects of participating in a pro-eating disorder online community vs. an eating disorder recovery group, and provide more information on the influence of these sites.

How Can Dietetics Professionals Help?
Dietetics professionals visiting pro-eating disorder Web sites will experience them much differently than affected individuals; therefore, the impact on and meaning of these Web sites to each client is infinitely more important than the professional’s view. As with all subjective portions of assessment, hearing from the client will guide the treatment plan and course of action rather than standard guidelines regarding hours of Internet usage per day, etc.

In the meantime, dietetics professionals working in behavioral health, eating disorders, weight management, and adolescent medicine may consider adding questions regarding Internet usage to their general assessment of clients. Although no evidence-based guidelines currently exist, common sense investigation of how much time is spent on the Internet, which type of sites are visited, and what the client considers the role of the professional team vs. the Internet community may be helpful in determining a course of action. Possible interventions may include parental supervision of adolescent Internet usage to prevent any viewing of pro-eating disorder sites, voluntary limits on time spent or type of sites viewed, and/or required discussion of Internet content during nutrition counseling or psychotherapy sessions.

In an ideal world, an individual attempting to recover from an eating disorder would not view pro-eating disorder Web sites or any other triggering media, but this can be accomplished only in a full-time treatment center. Ultimately, internal coping skills must be developed to provide protection from visual and other external triggers that influence eating disorder recovery and relapse. Media literacy is already accepted as one essential skill, since complete abstinence from all potential triggers is nearly impossible outside of treatment. With regard to pro-eating disorder Web sites, media literacy may include education regarding the computer-manipulation of images; dissection of nutrition myths and misconceptions promoted on a Web site; exploration of the mindset of someone trying to justify his or her eating disorder by recruiting “followers”; and how weight-obsessed pro-eating disorder Web sites reflect or distort the weight-obsessed general culture.

It remains to be seen how pro-eating disorder sites will impact the eating disorders landscape and the prevalence of eating disorders in general. It seems possible that once the bulk of the information is out there, interest will be lost, and the Web sites will fade. On the other hand, with stated goals that “someday the pro-anorexic lifestyle will be accepted in society,” we may be confronting these Web sites and their repercussions for many years to come.

— Jessica Setnick, MS, RD/LD, is the author of The Eating Disorders Clinical Pocket Guide and coauthor of The Eating Disorders Book of Hope and Healing. She provides training for professionals at Eating Disorders Boot Camp and speaks about eating disorders to community and professional groups around the world. Her Web site is www.understandingnutrition.com.

References

1. “Mixed Messages: Proponents say they offer ‘support,’ but a Stanford University study finds that patients who visited pro-anorexia Web sites were sicker longer.” Newsweek online at MSNBC.com. Available here.

2. Wilson JL, Peebles R, Hardy KK, et al. Surfing for thinness: A pilot study of pro-eating disorder Web site usage in adolescents with eating disorders. Pediatrics. 2006;118(6):1635-1643.

The National Eating Disorders Association’s Stance
“The National Eating Disorders Association actively speaks out against pro-anorexia and pro-bulimia Web sites. These sites provide no useful information on treatment but instead encourage and falsely support those who, sadly, are ill but do not seek help. These sites could have a severe negative impact on the health of those who consult them and encourage a ‘cult’ type destructive support system that discourages people from the treatment they so desperately need. Anorexia Nervosa is a potentially lethal disease and has the highest mortality rate of any mental illness. Bulimia is also a very dangerous illness with serious long term health consequences. Eating disorders cannot be taken lightly.

“Our emphasis is on steering people toward treatment and health. We offer educational materials for all ages, and a toll-free helpline (800-931-2237) with referrals to treatment professionals. Each February during National Eating Disorders Awareness Week, we support hundreds of events created by volunteers around the country. Our Annual Conference every autumn brings together treatment providers and families of those with eating disorders, informing and inspiring thousands of conference attendees with the latest knowledge and new personal connections.

“A goal of the National Eating Disorders Association is to raise awareness of eating disorders as serious, life-threatening illnesses—which are treatable. Most of those who enter treatment recover. Please visit us at www.NationalEatingDisorders.org.”