Lynn Grefe

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Sarah Palin, the unsuccessful nominee for Vice President in the United States in 2008 was asked: "How can you tell a 'hockey mom' from a pit bull?"

"Lipstick", she answered.

This whimsical, cutesy punch line was calculated to draw great applause at the Republican National Presidential Convention. The implication was clear: a hockey mom is every bit as tough as a pit bull, and therefore the same, except for a gloss of lipstick.

With the addition of Binge Eating Disorder (BED) to the Fifth Edition of the Diagnostic and Statistical Manual of Mental Illnesses (DSM-5) (American Psychiatric Association 2012), I am cautiously reminded of that kind of misinformed thinking which dangerously conflates two very different issues. We as a field face the challenge of showing the distinction between a serious mental disorder diagnosis of BED, and the much-debated weighty problems of an "obesity epidemic" (our society's words, not mine). The distinction is a whole lot more than lipstick, with many people already confusing a mental health problem with a weight status.

In 2012, I attended the conference of the International Association of Eating Disorders Professionals (iaedp) in Charleston, South Carolina. Hundreds of clinicians specializing in eating disorder treatment were there to receive information and updated training, inspiration and, of course, the support and hope we all share for better outcomes among those affected. Between sessions, I visited the Citadel, the military university. There, carved into one of the many walls of this pristine place, I came across some haunting words that pulled the whole trip together for me - "hope is not a course of action". I dwelled on those words for days, pondering their relevance to our field. The National Eating Disorders Association (NEDA) prides itself on providing hope, information, and support to people with eating disorders and their families. But, as we bring BED to the forefront, that phrase was a timely reminder that a plan of action is imperative in everything we do. We cannot just hope people get better. Rather, it is our responsibility to put into action programs that support, educate, and direct those affected to appropriate treatment, paving the way for them to get better.

The eating disorders field, as diverse and complicated as it is at times, is filled with dedicated and committed people. Yet, this newly declared diagnosis of BED is already creating misunderstandings and confusion within the field and certainly, one must think, to the general public. The confusion in many discussions stems from the lack of understanding of BED as a mental disorder versus the "obesity problem" - the latter continually reinforced in our mainstream media. Recent evidence has shown that weight-based discrimination is now on par with race-or gender-based discrimination (Puhl et al. 2008). So, being overweight brings enough problems of discrimination of its own and entering the possibility of a mental disorder, BED, adds to the confusion. There are questions as to whether there really can be health at any size, if diets are ever appropriate and for whom, whether health risks are visible based on appearance of a person's shape and size, and where and when interventions by physicians, family or friends should occur. Unfortunately, many people do not know that BED should not be treated with weight loss strategies, and much of the "obesity prevention" interventions and messages can inadvertently encourage weight cycling and dangerous eating disordered behaviors (Bacon and Aphramor 2011).

I remind people that we - NEDA - are not in charge of "National Eating", but rather represent an organization dedicating itself to serving those with eating disorders and their families. Therefore, as society tackles this so-called "obesity epidemic", our role is to protect those affected by BED and not allow them to get lost in the fray of inappropriate attention and treatment. This is no easy task, and it is often confusing in a weight-biased culture where the diet industry continues to be the only winner. Those in the eating disorder field know that 95 per cent of dieters regain their weight within five years (Grodstein et al. 1996; Neumark-Sztainer et al. 2007), and with shows like ABC TV's The Biggest Loser selling the myth that dramatic weight loss equals health and happiness, more and more people are likely to get caught in the "body mass confusion".

I am not here to resolve disagreements within the eating disorders field about weight versus health or the use of BMI but, overall, I believe our caring professionals have watched and experienced for too long, the indignities of a culture that demands we all strive to be a size zero and the stereotypes of a weight-obsessed culture. Further, clinicians know better than most how ravaged and pained their patients become as a result of those weight obsessions, and some patients sadly die. While some overweight people may or may not have the mental disorder of BED or another, those people who are perceived to be overweight (however that is defined) feel the stigmatization of our culture's impossible standards. History reminds us that generous weight was once a sign of success. Men had girth. Women were bosomy and round. A tour of art through the centuries exemplifies the beauty of the body, a body that in today's world would be demeaned as belonging to someone with no self-control.

Moving forward

So, what are we left with in moving forward? In the United States at least, we are subjected to far-reaching, misguided anti-obesity campaigns, which are targeted to shame children and their parents into losing weight; obesity prevention efforts that often do more harm than good; millions of children and adults with low self-esteem and negative body image; and nationally reported cost projections that state if nothing is done about the prevalence of obesity-related health problems one third of our population will suffer from diabetes by the year 2050. Meanwhile millions of people who suffer from a bona fide mental illness, such as BED or another eating disorder, some of whom may or may not be obese, or struggle with weight challenges, are lumped in with non-BED people who are obese.

our goal, in the eating disorders field, must be to wade through the muck of ignorance and to pull our patients out of despair and into treatment - not weight loss treatment, but treatment of a mental disorder that affects the person's well-being and health, regardless of his or her size. Strikingly, weight is not necessarily an indicator of any eating disorder; rather, many other symptoms more accurately tell the story. As with other eating disorders, BED has more to do with how people think and feel about themselves, and use food to compensate for difficult emotions, than anything else. There is increasing evidence that biological forces are at play and that those who suffer from an eating disorders do not just lack the will to cope differently (for example, Mathes et al. 2009).

Another goal must be to steer all people with anorexia, bulimia, BED or eating disorder not otherwise specified (EDNoS) toward resources and support. We need to educate their families, friends, and professionals to ensure a support system with a nonjudgmental approach. But therein lies the first problem - our perception of an eating disorder sufferer (what he or she looks like) dramatically affects the intervention strategies that we consider acceptable among families and friends.

Two scenarios Scenario one

Your roommate, who would be considered a thin person, experiences dizziness, fainting, mood swings, and often appears pale. You frequently witness this person avoiding the food on his or her plate or abstaining from meals all together. Worried that he or she might have an eating disorder, you approach your friend to set up a time to talk, you describe the behaviors you are worried about, and recommend that he or she make an appointment to see a professional opinion or get a physical exam.

Scenario two

Your roommate, who would be considered a larger person, often seems withdrawn and depressed. They frequently complain of stomach problems and you have noticed large quantities of food disappearing from your cabinets. You are worried about your friend's health, and suspect they might have an eating disorder, but you don't say anything because you fear they will think you are focusing on weight rather than being concerned about a serious mental disorder.

In the first scenario, you take every step that experts suggest taking when worried about a friend or loved one. In the second scenario, the friend is also displaying a number of possible eating disorders symptoms. However, your response changes. Why is this so?

As a starting point, the friend's larger size and our learned attitudes about people of size have influenced how we might go about helping them. We have come a long way in understanding that anorexia is a mental illness, but the false belief that people who suffer from this disorder have an "enviable willpower" remains prevalent among the general public. Because of the weight bias that exists in our society, the opposite is true with BED sufferers and to a lesser extend, bulimia sufferers. People who have eating disorders characterized by bingeing behavior are viewed as being "out of control" or "lacking self-discipline", as opposed to being people suffering from a mental disorder. This attitude is not confined to the public - studies have shown that physicians also demonstrate weight bias (Schwartz et al. 2003; Teachman and Brownell 2001). Something is very wrong with this picture, and it suggests a need for a new starting point in our approach to supporting people affected by BED.

Reflections

Ten years ago, when I entered this field, I had no knowledge that eating disorders had a stigma, were considered shameful or anything to hide. Why would I? My own child has suffered a serious eating disorder and I never once cringed or apologized. I saw that she was sick and needed help. But I learned quickly that I must have been blatantly naive for I found many others around me were embarrassed and ashamed to ask for help. Parents cried for absolution that eating disorders were not their fault. It never occurred to me that I had caused my daughter's eating disorder because, gratefully, I knew eating disorders came from a complex interplay of factors.

From that time forward, I saw that the most important thing we as a community could do to help people recover was to de-stigmatize the issue, and secede from the union of ignorance and stereotypes. Invoking the "stigma card" is a crutch, meaning an excuse to not seek treatment, an excuse not to tell families, an excuse not to feel good about ourselves, because shame is a dark cloud, a place where we sit waiting for it to rain. It has been going on with anorexia, bulimia, and EDNOS for many years. But the good news is that, based on our surveys and focus groups, we have significantly improved public perceptions for anorexia and bulimia.

In 2003, we learned from focus groups that most people would never tell anyone that they or someone in their families had an eating disorder such as anorexia or bulimia - and that shame was a significant barrier to getting help. In a professionally conducted national survey seven years later, in 2010, most respondents indicated that they saw no reason to be embarrassed and would tell a friend to seek help if concerned they had anorexia or bulimia. We will hold the field and the diagnosis of BED back if we do not learn from these lessons and work to quickly remove stigma about this illness as well.

A culture that is strongly focused on obesity prevention and perpetuates the widespread and inaccurate message that thinness automatically equates to health, has made weight stigma a real problem. We must be proactive to prevent this same mistake permeating the general population perception of BED. Weight stigma and discrimination of any kind is appalling and has significant impacts. It has been found - like race or gender bias - to impact employment practices, access to education and many other facets of life. A health organization in Texas required a specific BMI for employment (until NEDA and others vehemently protested); a college in Pennsylvania requires a "passing" BMI to graduate; Whole Foods gives bonus point discounts to employees who reduce their BMI, with no dangerously low limit identified. The list goes on.

Hopefully we have progressed to the point where most people can acknowledge that parents are not directly at fault for their child's illness. That said, I am certain more than once my daughter in her youth heard me ask: "Do I look fat in this?" Would I ask that today? Of course not. Should I be burned at the stake? I hope not. My point is that we have to accept that we make mistakes at times as parents, professionals, and clinicians. We must learn from them and avoid reinforcing shame and embarrassment about weight and eating disorders. We have the choice to fuel the myths, or progressively shut down negative messaging, gossip about others' bodies, generalizations about people based on their size and shape, and involving our patients in the harmful messaging surrounding us about weight loss. our patients with BED need treatment: no blame, no shame - simply, they need help.

A focus on weight loss is a strong precursor to dangerous dieting behaviors, weight cycling, and ultimately any one of the various eating disorders. People affected by BED now have a diagnosis, whether they know it yet or not, and, like other eating disordered patients, they are not easily identified by appearance. As with other eating disordered patients, stereotypes need to be diffused. It was often assumed that anorexia only affected young, rich, white girls. We now know that BED affects a disproportionate number of men in relation to other eating disorders and that EDNOS, hardly a household diagnosis, represents more than 50 per cent of all eating disorder cases (Wade et al. 2011). Thanks to emerging research, we also know that eating disorders affect people of all ethnicities and identity groups. We cannot automatically identify someone who has anorexia, bulimia, or EDNOS, and similarly, we cannot identify someone with BED, by appearance. It doesn't help that we have doctors and TV "gurus" advising us to "just get over it" and lose some weight. Add to this the many uninformed physicians who tell parents: "All the kids are on a diet, don't worry about it, your child looks great."

Hope into action

To increase understanding for BED we must expand our public education efforts to the same levels as offered for other eating disorders. NEDA has created a Binge Eating Disorder Task Force to include top clinicians and experts, and also families and sufferers. The goals of this task force are to identify how NEDA can develop the best possible resource base and deliver the information in the most effective way. While we included BED information in the past, this did not extend to a diagnosis for mental health insurance coverage; now that it is a diagnosis, we must feature it more prominently in all that we do. At NEDA, a spotlight is being placed on BED in all of our programs to ensure the public is aware of this serious illness and of the resources we offer for those affected. As the number of people affected by BED is much higher than other eating disorders, we are saying: "It's about time!" We also are incorporating a BED component into our National NEDA Navigator Program, which involves "trained friends" providing support to others. It is essential that our Navigators understand, as they support and guide those affected with BED and their families, that there are different aspects to BED. For example, BED patients may be of average weight, have no "physical symptoms" unless they are purging, or losing or gaining weight. In addition, if people with BED are overweight, at some point they may sadly have been subject to discrimination or bullying of some kind. Consequently, we need to recognize these possible differences, needs and concerns within this population.

Once again, the ultimate goal is to steer people toward appropriate treatment to achieve ultimately a long happy, healthy life. To be clear, this is health defined as overall physical and mental wellbeing, not size.

Early intervention

Another approach we must pursue is a genuine course of action for early intervention. If a child goes to school with bruises and cuts, we know that the school personnel would contact the authorities for child protective services. Yet, our population is restricting, purging, over-exercising, or bingeing with nobody raising concern. Not only are these dangerous behaviors overlooked, but new policies being put into place - like putting a student's "failing" BMI on his or her report card or publicly taking a student's weight - can exacerbate the problem.

Advocacy at all levels is required to overcome the ignorance in public understanding and improve access to treatment. For instance, NEDA is introducing legislation in states that requires eating disorder screenings in schools. If successful, we will need to provide easily implemented screening tools for eating disorders, including BED. Further, the education of all physicians must include these early diagnostic tools. We need them to recognize the signs and symptoms of BED as readily as one would recognize those of chicken pox. Interestingly, the concern and impediment, in some cases, is the fear that once we identify the students at risk, we won't have enough trained therapists to handle the cases. In addition, for the schools that are severely underfunded, there is a fear that this is one more thing on their "to do" list that they cannot handle. Our argument, of course, is twofold: currently BMI report cards are required in many schools, so this requirement is the antidote, so to speak. Eating disorders are potentially life threatening. Need we say more? To avoid diagnosing an illness because the current state of treatment is inadequate is no solution. Somehow, whether through legislation or mandated policy, we must intervene earlier to identify students at risk of all eating disorders before they become chronically ill.

In 2012, we successfully lobbied the American Medical Association (AMA) to launch an online course for the early recognition, diagnosis, and referral for eating disorders. We enlisted some of our NEDA professional members, who are also members of the Academy for Eating Disorders (AED), to work with the AMA to create this program. The AMA assured us that they would promote this widely, to inform physicians. Again, education is vital in every direction so that our patients have doors opened to them that never existed before, and so that physicians can become enlightened to the eating disorder diagnoses.

Finally, as we throw the lifeline to the BED population, our public education programs are likely to focus first among people who may be affected. You can be sure that many people who have BED do not even know that it has a name yet, or that their behaviors are recognized as any type of diagnosable illness or disorder. So, we will be negligent if we don't incorporate basic education about BED into all that we do. The self-revelation for the many people who have suffered secretly will be a new, wonderful day because they may now be able to access treatment.

That BED has become part of the DSM-5 is a significant step. However, until we mainstream the illness, and bring it into public understanding as we have with anorexia and bulimia, many people will remain untreated. There is much work to be done for all eating disorders, and BED is as serious and threatening as the others. For those of us who have suffered or have patients, friends, or loved ones who are suffering, the misinformation and social stigma that surround eating disorders can be frustrating and downright angering. However, let's channel that energy and passion into standing up for this significant population of people with BED who have been under-represented, misunderstood, and underserved for many years. I am confident that with the dedication, passion, and expertise in this field, we can succeed.

The next time we are asked the difference between obesity and BED, we can point to a true psychiatric diagnosis in the DSM-5.

References

American Psychiatric Association (2012) DSM-5 Proposed Diagnostic Criteria for Binge Eating Disorder. Online. Available: http://www.dsm5.org/ProposedRevisions/Pages/ proposedrevision.aspx?rid=372# (accessed 18 May 2012).

Bacon, L., and Aphramor, L. (2011) "Weight science: evaluating the evidence for a paradigm shift", Nutrition Journal 10: 9.

Grodstein, F., Levine, R., Troy, L., Spencer, T., Colditz, G. A., and Stampfer, M. J. (1996) "Three-year follow-up of participants in a commercial weight loss program: can you keep it off?", Archives of International Medicine 156(12): 1302-6.

Mathes, W. F., Brownley, K. A., Mo, X., Bulik C. M. (2009) "The biology of binge eating", Appetite 52(3): 545-53.

Neumark-Sztainer, D., Wall, M., Haines, J., Story, M., and Eisenberg, M. E. (2007) "Why does dieting predict weight gain in adolescents? Findings from project EAT-II: a 5-year longitudinal study", Journal of the American Dietetic Association 107(3): 448-55.

Puhl, R. M., Andreyeva, T., and Brownell, K. D. (2008) "Perceptions of weight discrimination: prevalence and comparison to race and gender discrimination in America", International Journal of Obesity 32: 992-1000.

Schwartz, M. B., O'Neal, H., Brownell, K. D., Blair, S., and Billington, C. (2003) "Weight bias among health professionals specializing in obesity", Obesity Research 11: 1033-9.

Teachman, B. A., and Brownell, K. D. (2001) "Implicit anti-fat bias among health professionals: is anyone immune?", International Journal of Obesity Related Metabolic Disorders 25(10): 1525-31.

Wade, T. D., Keski-Rahkonen A., and Hudson J. (2011) "Epidemiology of eating disorders", in M. Tsuang and M. Tohen (eds) Textbook in Psychiatric Epidemiology (3rd edn) (pp. 343-60), New York: Wiley.

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