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Chances Are, What You Know About Eating Disorders is Wrong

Although clinicians (and medical professionals not specializing in eating disorders) often carry a lot of false beliefs about EDs, the public is even worse. Way worse. The portrayal of eating disorders in the news contributes to the myriad of myths and misconceptions that surround EDs. O’Hara and Clegg-Smith wanted to find out how exactly newspapers “contribute to shaping public perception of EDs.” 

It is awful when doctors are dismissive and ignorant, but it is even worse when you encounter these attitudes from your friends and family. When they not only don’t get it, they don’t want to get it. As O’Hara & Clegg-Smith point out, this ignorance and “disconnect potentially prevents timely ED diagnosis and reinforces a stigma that limits treatment availability.”

While researchers and ED specialists increasingly understand that eating disorders are “caused by a combination of genetic and environmental factors” (for example, evidence from twin studies suggests that genetic factors account for >50% of the risk for developing an ED), the public does not. 

Surveys of what the public thinks about eating disorders and those struggling with them are, well, nothing short of depressing. A real failure for all parties involved, the clinicians, researchers, journalists and media outlets.

A 2005 poll commissioned by NEDA (National Eating Disorders Association) revealed that American adults think that dieting (66%), the media (64%) and family (52%) are the primary causes of eating disorders. And only 30% think there is any link between genetics and eating disorders.

Brits are no better: 35% feel that ED patients “could pull themselves together” and 33% think that they “are to blame”.

O’Hara & Clegg-Smith point out that besides the causes of eating disorders (etiology), the public also tends to have the wrong ideas about the epidemiology and severity of EDs. They highlight a few areas where the public opinions are divergent from the medical consensus.

  • GENDER: Public thinks EDs are female-only disorders. Research reveals that at least 10% of ED sufferers are men (and that’s probably an underestimate).
  • AGE: Public thinks ED patients are teens or adolescents. Research reveals that EDs are not uncommon in adults.
  • RACE: Public thinks EDs are white-only diseases. Research suggests that ethnic minorities have comparable rates of EDs. “No study has found an absence of ED symptoms in minority populations” 
  • SEVERITY: One study showed that ONLY 3% thought anorexia and bulimia had any physical consequences! Researchers have long-established that eating disorders have severe physical consequences (heart failure, bone density loss, kidney failure, dental erosion, etc.. )
  • TREATMENT: Public thinks eating disorders are easy to cure. Research suggests only about 50% fully recover, 30% achieve partial recovery while 20% remain chronic.

The impact of this disconnect is huge. O’Hara and Clegg-Smith summarize the implications really well, so I’ll quote them a lot here.

SELF-PERCEPTION & EARLY DETECTION 

Families and friends who hold a particular demographic picture of EDs may fail to recognize disease among people who fall outside this stereotype, preventing early diagnosis… Gordon et al. [19] asked three groups of undergraduates to read a passage describing an adolescent girl with ED symptoms; the only difference… was the girl’s race (African American, Caucasian or Hispanic). When asked whether the girl had any ‘‘notable’’ medical problems, respondents were less likely to consider information about her ED symptoms when she was portrayed as an African American or Hispanic.

ACCESS TO TREATMENT

Becker et al. [11] reported that ‘‘eating disorders may go unrecognized in clinical settings in up to 50% of cases’’ (p. 1092)…. Anecdotally, many patients report that even when an accurate diagnosis was made, their doctors initially told them simply to ‘‘eat better’’ (NEDA President Lynn Grefe,personal communication, 7 April 2005), and a study of Australian clinicians found that ED patients were seen as self-inducing their illness, which was associated with the recommendation that patients ‘‘take self-control’’…

You can read more about how clinicians’ negative attitudes can do more harm that good when it comes to eating disorder treatment in my previous post (I encourage you to read the comments, too).

INSURANCE COVERAGE

Currently, most health plans provide little or no coverage for EDs, limiting the provision of effective treatment after diagnosis [16]. Compared to other mental illnesses, EDs have not benefited extensively from policy efforts within the United States to expand mental health insurance coverage. Since 1991, 38 states have passed legislation mandating equal insurance parity between some mental and physical conditions [26], but in many cases these policies demonstrate a preference toward illnesses that are seen as ‘‘serious’’ or ‘‘biologically based,’’ such as schizophrenia, bipolar disorder, obsessive compulsive disorder and autism [27].

There’s also STIGMA that results from the general public misunderstanding surrounding eating disorders.

A survey of the British public reported that ED patients attract ‘‘fear, hostility and disapproval’’ rather than ‘‘compassion support and understanding’’ [14]. …most [college students, parents of teens] knew that EDs were serious illnesses, but would be ‘‘too ashamed to tell others or possibly seek help for themselves’’ if needed [16]. Physicians have also been found to stigmatize people with EDs, with a 1999 survey of British gynecologists showing 31% of respondents held ‘‘pejorative’’ attitudes toward EDs [29]. Such attitudes can isolate patients from the social and emotional support needed for recovery and stop individuals from seeking treatment for fear that others will learn of their condition [30].

To find out how eating disorders are portrayed in the media, they analysed the coverage of EDs by seven daily U.S. newspapers over the course of one year. The newspapers the authors surveyed were: The New York Times, USA Today, Baltimore Sun, Minneapolis Star Tribune, San Diego Union-Tribune, St. Louis Post-Dispatch and Pittsburgh Post-Gazette (2 national, 5 regional).  They found 252 articles but used only 210 because 30 of the articles focused on Terri Schiavo (and the connection to bulimia) and 12 on the (short-lived show) “Starved” (they excluded these for the fear that they would bias the analysis).

Table 1 summarized the breakdown of article placements.

O'Hara - 2007 - Table 1 Adapted

Summary and Highlights of the Findings: 

For this, they used a sub-sample of 90 articles that “included profiles of individuals with EDs”:

Epidemiology

  • 48% of articles were in the “Arts & Entertainment” section, 13% in “Health”
  • 95% of individuals profiles were female
  • only 18% of articles profiled older adults, and even then relatively young or those whose conditions might have started years earlier
  • in the cases were race was determined, 94% of the individuals were white. Only one person was black (in an NY Times article about the growing prevalence of EDs in blacks and other minorities).

Etiology (causes)

  • when mentioned, 48% attributed to parental influence (verbal/sexual abuse, nagging)
  • individual struggle, low self-esteem, stress also commonly mentioned
  • often frames as a simple personal decision: “At 14, she struggled with body image. She stopped eating and slipped into anorexia… [50]”
  • 2 articled mentioned that “genetics” or “biology” playing a role in the etiology of EDs

Severity, treatment and recovery

  • only 11% stated medical complications (often in retrospect)
  • only 21% had any mention of treatment (presented as a straightforward solution)
  • 8% mentioned professional help of any kind
  • less than 1 in 10 articles “framed EDs as a condition worthy of or requiring medical” treatment
  • often portray recovery as simple, higher rates of success than true
  • “Actions and events that reportedly caused individuals to recover included ‘snap[ping] out of it'[50]; being inspired by a triathlon to eat better [51]; having a dream about life after death [52]; and ‘[making] peace with her size’ [53].”

Articles in more serious sections (heath versus entertainment), on the whole, are better at portraying the complexity of EDs. But they still suffer from all of the aforementioned problems, just not as much.

EDs are only newsworthy in the context of famous people who suffer from them. This frame essentially may serve to distance readers from any engagement with this issue beyond the voyeuristic. It may also reinforce the public perception that anorexia and bulimia are conditions with entirely socio-cultural roots……By primarily profiling women, newspapers either perpetuate or at least fail to challenge a perception that may contribute to under-diagnosis among men

O’Hara & Clegg-Smith urge advocates and educators to combat this: highlight the true demographics, the complexity of the disorder, the difficulties in recovery, and so on. They urge more people of “all walks of life” to speak out. It is difficult to be open, but if you feel you can, even just to those around you, it is worthwhile.

Readers, how have you been affected by the way the news media often portrays eating disorders? Has it shaped how you or those around you think about eating disorders? What would you like to see in the news media coverage of eating disorders?

FOLLOW-UP POST: UK vs. US in Media Reporting of Eating Disorders: Who Does it Better? This post compares media coverage of eating disorders in some popular news outlets in the UK and the US. Check it out to see who does it better!

O’Hara, S., & Clegg-Smith, K. (2007). Presentation of eating disorders in the news media: What are the implications for patient diagnosis and treatment? Patient Education and Counseling, 68 (1), 43-51 DOI: 10.1016/j.pec.2007.04.006

Written by Tetyana

Tetyana is the creator and manager of the SEDs blog. She has an MSc in Neuroscience from the University of Toronto. Tetyana is passionate about science communication and knowledge translation. To get in touch, use the ‘Contact’ form on the website.

Discussion

18 Responses to “Chances Are, What You Know About Eating Disorders is Wrong”

  1. Thank you for this article. My daughter’s 26th birthday would have been this coming Monday, but we lost her 3 years ago after a 9 year struggle with ED. We struggled with just about everything mentioned above. Including my own early perception that she could “snap out of it”. Once I finally realized she couldn’t, the horror of some of the treatment she received at the hands of so-called professionals chills me to this day. Then I had to endure and overcome issues with friends and family who were well meaning, but ignorant of the complexity of the situation and would say and do the most harmful things. Insurance covered only a sliver of the treatment, and I was luckier than a lot of parents. There seems to be some increasing awareness that this disease is very real, but everyday I hear parents say the same things I did over a decade ago. We’re not winning the war very quickly and this disease does have a body count attached to it.

    Posted by Cheryl Veldman | May 21, 2012, 10:16 AM
    • Cheryl,
      I am so sorry to hear of the loss of your beautiful daughter. Very rarely do I see the parents’ side of this struggle. I am 20 years old, and have been battling my ED for almost 8 years now. This article was so interesting to me, as was reading your comment. I always felt so alone in this, and never really gave much thought to how all of this was affecting my parents… or my siblings. I also spent so much time being angry with them for not understanding- this article gave me a sense of, perhaps, WHY they have such a hard time understanding this disease.

      Thank you for posting this article, and thank you, Cheryl, for having the courage and compassion to post your comment. It gave me a whole different perspective on my ED, and who it affects.

      Posted by Olivia | May 21, 2012, 2:08 PM
      • Olivia, my guess from your taking the time to offer your sympathy to me, is that you are a highly compassionate person, so I am so sorry you have experienced the disease, and I think my daughter would have told you she knows exactly what that sense of isolation feels like and I am so sorry for it. I really regret a lot of what I did early on as a parent, I’d like to think I’m smart enough, but this is a highly misunderstood disease especially by my generation. It didn’t mean we didn’t love our daughter, we were just terribly ignorant about what was afflicting her. Don’t give up on your folks’ evolvement, help them understand by suggesting they read this article as a starter, maybe reviewing some of the material on the NEDA website, talking to other parents or ED specialists. My honest guess: your parents are scared by something they don’t understand. I was for sure, and sometimes fear comes across as something entirely different.

        Posted by Cheryl Veldman | May 21, 2012, 3:25 PM
        • Thank you Cheryl and Olivia for your comments.

          Cheryl: I’m terribly sorry about the loss of your daughter. I think what you said about parents being scared by something they don’t understand is very true. It is especially difficult for immigrants coming from countries where these disorders “didn’t exist” (of course they do, they are just not talked about at all), or in even more stigmatized sub-groups of patients (minorities, males, etc..)

          Olivia: it is indeed a hard thing to understand. It is hard to explain to someone why restricting your intake or purging may be incredibly anxiolytic. It is difficult to explain the powerful fears that someone with an ED usually has, etc..

          I think what sometimes happens, particularly in older adolescents, but this was also the case for me, parents and people in general, assume that if you are aware of it and understand you need to recover, you will. It is hard to explain that, regardless of my scientific background or my research training, this is a mental disorder… it is not rational. Knowledge is useful, but it hasn’t helped me beat this yet. Emotions are powerful.

          I always welcome any suggestions or requests for any future topics you’d like to see covered.

          Posted by Tetyana | May 21, 2012, 9:19 PM
    • My prayers will include you next Monday, Cheryl.

      Posted by Kathleen MacDonald | May 21, 2012, 4:17 PM
  2. This is a long needed and very accurately portrayed article thank you from the bottom of my heart.

    Posted by Rebecca Hodges | May 21, 2012, 12:18 PM
  3. As a parent of a 13 year old boy with ED, I have learned so much these past 10 months about the disease, and it is a mental disease. The first thing out of people’s mouths when I say my son has an eating disorder is, “Isn’t that usually a girl problem?” or, “Just have him eat more!” This came from physicians, pschologists, friends and family. Thank God I found a wonderful psychologist and RD who specialize in ED. They are helping us unravel the complexity of this monster, ED, who has taken over our lives, taken my son. He is slowly coming back, but, as research says, it is one of the slowest diseases to overcome. Knowledge is power, when it comes to our children, we have to do the research, listen and be present. ED Bites is great website to find information. Thank you for posting this article.

    Posted by Shannon Niemeyer | May 21, 2012, 5:15 PM
    • Shannon, thank you for commenting. I am really sorry to hear about your son. It is unfortunate that there is very little data available on males with eating disorders (for many reasons). I’m glad that you have found professionals that are understanding and helpful.

      It is a long battle for most, unfortunately, but, the majority to recover or partially recover (depends on a lot on how you define “recover”).

      I wish you and your son all the best.

      Please let me know if there is any particular information you are interested in, and I can see what has been published on it and review some of the literature as well.

      Posted by Tetyana | May 21, 2012, 8:52 PM
  4. This was a much needed study…thanks O’Hara and Smith for accomplishing it! It confirms what a lot of us already know and encourages us to keep plugging away at education, advocacy and especially helping parents. It may be slow but the truth is coming out.
    Lynn
    facebook.com/EDParentCoachLynnMoore

    Posted by Lynn Moore | May 21, 2012, 6:28 PM
  5. Here via LiveJournal. Thanks for posting this. I have an eating issue (not diagnosed as an ED), but I too believed many of the major myths about EDs that you highlight here. In fact, I have to say that the main Dutch Internet site about EDs, Proud2bme (it has a U.S. equivalent by the same name), is geared almost exclusively towards teen girls and highlights self-esteem and body image as major causes of EDs. I am very saddened that even a major ED site got many of the facts wrong or stereotyped. Incidentally, there is a fairly recent article in a Dutch psychiatry journal about accuracy of information on EDs provided by Internet sites. I may post about it if I still have access to the article.

    Posted by Astrid | May 26, 2012, 7:07 PM
    • Hey Astrid, thanks for your comment! I find the same problem with organizations like NEDIC and NEDA (exclusively toward teens, emphasizes body image, very sociocultural view of EDs, etc..) It is a bit disheartening, I agree.

      Posted by Tetyana | May 28, 2012, 8:21 PM
  6. Wonderfully written! Thank you! One of the first psychiatrists I was sent to told me he was going to have me eating more by the time I was done in partial with him. It threw me off of the path to recovery even more. I hope this article helps people understand.

    Posted by Susy Hogan | June 4, 2012, 2:29 PM

Trackbacks/Pingbacks

  1. […] young woman makes for the sake of trying appear like a size 0 model.  Science of Eating Disorders May 2012 article by Tetyana, cites harrowing statistics published by the National Eating Disorders Association […]

    Changing Public Awareness | Eating Disorders - Dispelling the Myths - January 12, 2013

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