Chevese Turner

End Binge Eating Disorder

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A radio interviewer asked me if it is true that a majority of Americans have binge eating disorder. "Surely", the interviewer speculated, "if we have an obesity epidemic in our country and around the world, then binge eating disorder must be rampant."

Another common conversation takes place during Binge Eating Disorder Association (BEDA) outreach and educational work. People usually say something like this: "I definitely have an eating disorder. I eat too much and love food. I am an emotional eater and I need to stop." They usually goes on to inquire how BEDA can help them stop overeating and usually there is a request to suggest a diet and exercise regime that will result in permanent weight loss.

Clearly there are multiple layers of misunderstanding and complexity around this particular eating disorder that must be addressed. Emotional and overeating are not BED. The general public is uneducated about eating disorders in general and even further behind the curve when it comes to what qualifies as BED. This ignorance implies two areas of concern: 1) there is not the understanding of the severity of eating disorders; and 2) the casual use of the term undermines the ability of people to identify and understand that BED is a mental health issue that trained professionals must address.

From the perspective of an advocacy organization, it is imperative that we understand first and foremost what the BED community, made up of people with the disorder and their families, need and want. We also must understand the interface of this community with clinicians, researchers, advocates, and educators. The stakeholders bring complex perspectives about prevention, treatment, and public policy that keep an advocacy and educational organization like BEDA busy in its efforts to provide information about the need for increased research, treatment resources, and a message of hope.

It's an eating disorder, stupid

Borrowing from former US President Bill Clinton's 1992 campaign slogan, "It's the Economy, Stupid", the title of this section is meant to bring attention to the fact that far too often we hear and read information about binge eating disorder that is conflated with obesity. Binge eating disorder is relatively rare, despite being the most prevalent eating disorder. This said, it is often discussed within the context of obesity lending to confusion among healthcare providers and the general public. This alone may be preventing people with BED from getting access to care and/or appropriate treatment. The "voice" of obesity concerns are much louder, well funded, and represent a larger number of people. We must clarify and define the issue so that progress can be made in both prevention and treatment.

It is important to note that not all people with BED are obese and not everyone who is obese has BED (Hudson et al. 2007). Despite this knowledge, BED is underrepresented at major eating disorder and mental health conferences while obesity is often a headlining topic. I note that obesity, at this time, is not considered a mental health or eating disorder. Clearly, mental health issues such as depression plague those living in larger bodies, but as of this writing there is not enough evidence to classify it as such. This lack of clear communication about clinical presentation, treatment modalities, and recovery tools leaves clinicians without the understanding of the nuances of BED that are critical knowledge for effective care. They are left uneducated and unskilled about how to help those with the most prevalent eating disorder.

Funding for eating disorders research as a whole is dismal, so funding for large, multi-center trials on BED is unlikely to take place anytime soon. It only makes sense, therefore, that researchers and institutions would look to large obesity trials as a way to carve out information that can lend to some understanding and prevention of BED. The concern with this approach is the lack of information from inclusion of people with the disorder who are not obese. It is a dilemma that will limit or fractionate our knowledge to some extent.

Recognition that overeating is a part of normal eating is important, since most people overeat from time to time. Binge eating to cope with unpleasant feelings or situations is abnormal and falls in line within its designation as a mental health issue rather than an issue of weight. Bingeing for someone with an eating disorder provides temporary relief from stress around difficult emotions and feelings. The resulting distress around the behavior affects the person's self and body esteem to the extent that is mentally crippling.

Like any mental health disorder or physical disease, one treatment will not be appropriate for every patient, just as the experience of the disorder is not uniform. As with all eating disorders, there is much to learn about both BED's biological and environmental underpinnings.

Those of us in the advocacy field know that any issue requires education of the public to address misconceptions and realities through evidence-based research, clinical wisdom, and stories from those who have lived the issue at hand. BED is no different and the work has only just begun.

Advocacy for the most prevalent eating disorder is in its infancy compared with that of anorexia and bulimia. There are vast misconceptions in the general public and among healthcare providers about everything from BED's status as a true eating disorder, pathology, and treatment methods, to expected outcomes of treatment.

We must, on behalf of those struggling, communicate that BED is a serious mental health disorder that does not discriminate according to shape or size. While obesity may be a part of the patient's concern for his or her wellbeing, it is not the only factor with regard to identification, treatment, and recovery.

So, why is there misunderstanding and no clear communication around what BED is and is not? Simply put, it is a combination of the disorder only recently being recommended as its own distinct diagnosis in the Fifth Edition of the Diagnostic and Statistical Manual of Mental Illnesses (DSM-5), a lack of research and clinical expertise, and a public conversation around obesity that increasingly overshadows concern for eating disorders. Hallmarks of eating disorders are evident in those with BED, but it will take a considerable amount of time to educate those on the front lines, like primary care physicians, to look beyond weight and ask the questions that are critical to identifying an eating disorder.

There is one more critical issue standing in the way of full recognition of BED and the ability to bring it from the shadows of shame and isolation. This issue is weight stigma which, by its definition, places blame on the person with the illness and diminishes his or her social identity, and adds fuel to the fire.

Weight stigma by any other name is weight stigma

Canadian-born sociologist and writer Erving Goffman described stigma as "the process by which the reactions of others spoil normal identity" (Goffman 1963). BEDA and others recognize that the designation of BED as a mental health disorder alone provides an immediate level of stigma for those suffering. What is not always understood, even among some eating disorders clinicians and researchers, is the additional layer of stigma placed on the person with BED who is living in a larger body and what this means to the possibility of recovery. This external manifestation of size often results in multiple insults to a person's sense of self and mental/physical health status on a daily basis.

When BEDA first decided to address the issue of weight stigma, based on the mounting evidence it contributes to the expression and entrenchment of BED, and announced its first annual Weight Stigma Awareness Week in September of 2011, we were asked on several occasions why we would address an issue that clearly belonged in the field of obesity. The question was appropriate as BEDA clearly wants BED to be recognized as a mental health disorder so that effective treatments can be administered. Are we talking out of both sides of our mouths?

Weight stigma is not an issue that is exclusive to those who are obese. It is impossible to talk about body image or esteem issues and not talk about weight stigma. People all along the spectrum of eating disorders are fearful of living in a larger body. A percentage of those with BED are not only afraid, but actually realize the severe disapproval of others based on the characteristic of size. A

plethora of research and emerging evidence confirms that this is an important issue for the BED community and, BEDA would argue, the eating disorders community as a whole.

A study published in the 2012 April International Journal of Eating Disorders found that Internalized Weight Bias (IWB) in Obese Patients with BED "was positively associated with eating disorder psychopathology, fat phobia, and depression, and negatively associated with self-esteem. IWB made significant independent contributions to the variance in eating disorder psychopathology even after accounting for fat phobia, depression, and self-esteem" (Durso et al. 2012).

Our society promotes and encourages weight stigma. The external becomes an internal expression of low self-esteem and increased anxiety that can only be addressed through mechanisms to decrease stress and disassociate from the pain that is a result of stigma and bias (Puhl and Brownell 2006).

Maladaptive eating behaviors become the primary coping mechanism for people who experience and internalize weight stigma (Haines et al. 2006; Neumark-Sztainer et al. 2002; Puhl and Brownell 2006). People who live in larger bodies can attest to the fact that on a daily basis they are bullied, harassed, or discriminated against either directly or indirectly through the media, television shows, advertising, movies, jokes, family members, friends, and healthcare providers.

BEDA challenges you to take a day and count how many times you hear a fat joke, fat talk, a discussion about someone's will-power, motivation, or abilities based on their size. Notice how many commercials for diet and fitness programs you see in a day's time, and take some special time to watch a larger person and the care he or she takes to not move in to another person's space. Most likely you will notice he or she is on high alert and monitoring the reactions of others to the space they take in the world. Food allows a temporary retreat from this heightened state.

Think about the moments you have experienced depression, anxiety, or sadness and how incapacitated you felt. Did someone react to you in a negative way as you were feeling your emotions? Did he or she make fun of you and tell you that you are unmotivated and call you names? Did you see constant ads about how you should feel and how little money it would cost you to use a program to solve how you are feeling? Was the implication made in these ads, news stories, or television programs that you feel the way you do because you are irresponsible, deviant, and lazy?

This is what people who are living in larger bodies experience on a daily basis. They are discriminated against in the workplace, given lower-quality healthcare, and experience disapproval, criticism, and bullying from family members, friends, and others. For the person struggling with an eating disorder this daily insult can be unbearable and further entrench a person's use of food as a coping mechanism, which leads to increased distress.

To diet or not to diet

Advocates, clinicians, and researchers are often asked if someone with BED who is also obese should diet. Whether binge eating is really an addiction or not is the next most common question. As with most other aspects of this disorder, there are no definitive answers in the research.

This said, there is no shortage of opinions. Most researchers in both eating disorders and obesity fields will acknowledge that whether you have an eating disorder or not, it is very unlikely that if you are overweight or obese that you will be able to maintain a weight loss for more than five years. It's a prime example of the biological instrument of species protection at play. Humans, over time, adapted to survive times of limited access to food. In an environment of plenty our bodies do not know to turn off the mechanisms that allowed us to store fuel for centuries. Our bodies are genetically wired to save fuel, some better than others.

At the same time, dopamine, a brain chemical that sends signals between nerve cells, is shown to increase in the brain when pleasurable foods are eaten. Dopamine plays a major role in the brain system that is responsible for reward driven learning. Therefore it would seem that foods can be addictive.

Both the difficulty in maintaining weight loss and the release of dopamine are traps for people who find themselves in the right environment for an eating disorder. They are motivated to eat highly palatable foods as a way to relieve anxiety and disassociate from difficult emotions.

For those who gain weight, the distress of their body size and shape fuels their determination to diet and maintain a body size that fits ideals about what is acceptable and a "healthy weight". Unfortunately, for someone with BED, this is often a set-up for increased eating disorder thoughts and behavior. For every person with BED, bingeing causes great distress, and often triggers a cycle of binge-diet-binge. Dieting or restriction is seen as a way to stop the behaviors, but ultimately the person returns to bingeing as a coping mechanism. It seems there is no clear path with regard to how to "treat" obesity, much less how to treat an eating disorder that sometimes involves obesity.

Treatment is in the eye of the beholder

The World Health Organization (WHO) defines health as being a state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity. If this is the case, it is in the best interest of the treatment provider to offer a compassionate approach to any physical or mental health problem, including eating disorders.

Unfortunately, as we know, there are many ways in which economic interests direct healthcare, and for this reason it is imperative that the advocacy community continue to question the evidence around treatments being offered. Treatment protocols will benefit from increased communication around what BED is and is not.

The US government and third-party payers are poised to spend a great deal of money on obesity treatments and programs that have little or no evidence that they reduce weight permanently. Despite this knowledge, commercial interests continue to claim efficacy only to contribute to the cycle of gain-diet-gain, or yo-yo dieting. This is of particular concern to the eating disorders community for obvious reasons. Are we going to allow people with an eating disorder to engage in treatments that serve to change body size, but ultimately result in regain and a continuation of the binge cycle? How do BED patients who have participated in weight management programs fare two, five 10 years out? Is the goal of physical, mental, and emotional health achieved? There are many questions and concern that some treatment modalities ultimately may be a continuation of the problem. It would seem that stabilization would be a first-tier goal along with resolution of the eating disorder until there is evidence that an approach that includes weight loss has lasting effects and does not set a person up for relapse.

BEDA offers support to those seeking help and is involved with various eating disorders scientific and clinically oriented organizations that help guide our own understanding of the current knowledge and expert thought around treatment. We encourage people to do their homework utilizing resources provided by BEDA and others, and to educate themselves about the disorder, the evidence-based and clinically accepted treatment recommendations, and the risks and benefits of any given modality.

The cornerstone of treatment for any eating disorder is talk therapy. A multidis-ciplinary team approach is utilized by many out-patient, residential, and in-patient centers so that nutrition, medication, and co-morbid conditions can be assessed, monitored, and treated. This said, because BED often goes untreated for years, people often seek one or more of the following before realizing that another approach is necessary for overarching health: commercial diets, bariatric surgery, major dietetic changes like vegetarianism, veganism, no sugar or white flour, or low-fat and low-carbohydrate diets.

The goals we hear from those struggling is to stop bingeing, feel less anxious, have more time to do the things they want to do with their lives, and to feel comfortable with their bodies. This, unfortunately, is often a losing battle as the approaches mentioned previously provide no evidence to show resolution of the eating disorder nor do they address the purpose the binges serve. This failure solidifies the feelings of hopelessness and shame.

As advocates, we have grave concerns regarding the diet industry's level of voice and prominence and the lack of education around eating disorders in the healthcare community. A culture of "thin is beautiful and healthy" permeates our culture to the disadvantage of many. Across the spectrum of size, people feel and act on the desperation to be thin, often to the detriment of good health. A focus on one's wellbeing is paramount to health whereas size and body shape are not. We cannot determine a person's health status merely by looking at him or her. We can guess, but unless we examine the person, take his or her vitals, read his or her health history, and view his or her blood values, it is unlikely we know whether he or she is healthy or not.

While it is not appropriate for BEDA to determine what treatment model is appropriate for any person, it is essential that we advocate for treatments that do not cause harm, but rather improves the person's wellbeing. Treatment is an important decision that is made between the person and their family or loved ones. We support ongoing research and encourage people to consult with experts and look to those who have found recovery for ongoing support.

We hear an awful lot about the financial, personal, and societal costs of public health concerns like obesity, cancer, or diabetes. The cost to both the patient and society elevates as time passes and these conditions are left untreated. BED and other mental health conditions are no different.

A person with BED is likely to experience misdiagnosis and several rounds of dieting before they realize or are told that professional treatment is needed. This contributes to a sense of being different and alone. Stories of missed life opportunities like higher education and jobs are common among people who share their stories. Life goes on hold as the eating disorder takes up more and more of each passing moment.

It is important to evaluate the costs of this and other eating disorders within the context of the individual experience and societal responsibility. This estimate of the financial, emotional, mental, and physical toll can build a case to further explore effective prevention and treatment in an attempt to realize health.

Personal costs of the eating disorder may include all or some of the following:

• Increased psychological distress and co-morbid conditions

• Higher healthcare costs

• Inability to develop or maintain interpersonal relationships

• Family discord

• Isolation and shame

• Failure to thrive (school, career, social)

• Increased disability over time resulting in a decrease in resources and access to care

• Societal costs may include all or some of the following:

• Social functioning and ability to hold a job (lost wages)

• Disability funding by state and federal government for healthcare and living costs

• Decreased productivity by those who work

• Economic reality of length of treatment necessary for recovery

• Culture of stigma and blame on the individual

We are only just beginning to understand the costs of BED as people emerge from dark shame to the light of hope. Their stories are heart-felt and moving. Their pain is palatable. Their spirits are begging to heal. So, where do we go from here?

Future directions for prevention, treatment and recovery

First and foremost, we must lift the shroud of secrecy around BED. We must normalize it to the extent that people are not inhibited to ask for help or information, and are willing to talk about their journey. BEDA has made every effort to create a culture of openness. We encourage open communication and community. We provide the tools which are essential to taking the first steps and encourage an environment that is not stigmatizing where every beautiful shape, size, color, and gender can gain self-acceptance: an important step toward change and recovery.

The following are some general steps that the BED advocacy is taking to create its community of support and knowledge:

• Raise awareness in general public to include

Who is at risk

Biological and environmental risk factors

Diversity of individuals with BED

Early signs and symptoms

Treatment options and levels of care

Differentiation between "normal" overeating and BED

BED is not a "choice"

Role of weight stigma

• Raise awareness among mental health and allied health professionals, educators, payers and policy-makers

Who is at risk

Cost to individual and society Need for increased research Treatment/Early interventions Referral and education sources BED with/out obesity Role of weight stigma

• Increase advocacy, education and outreach to

National, regional, and local eating disorder organizations

Mental health advocates

Educational institutions

Healthcare organizations

Provider organizations

Athletic groups and clubs Families

• Provide health-focused prevention solutions that are integrated in to existing and future general and obesity-focused initiatives

• Confront, address and educate on the negative effects of weight stigma

• Continue to build BED community as a source of support for those struggling and their families

As we realize DSM-5 recognition of BED, there is a sense of validation among those who are struggling or have struggled with this disorder. No longer is BED the "red-headed step child" of the eating disorders community. With validation, hope, and community it is possible to identify, prevent and treat BED with the ultimate goal of full recovery and a life of purpose and many gratifying moments.

So, how can advocacy help those with BED? How do we give them hope for a quality of life that includes the joy of good health and body movement? How do we encourage recovery and freedom for the cyclical pain of bingeing and dieting? How do we shield them from the effects of the stigma they will either encounter and/or fear?

BEDA aims to encourage people who are struggling with binge eating disorder to emerge from the shadows and become part of the BED community. We must provide resources and information so that people can have easy access and find help in their communities or via the internet. Educating the public is critical so that identification of the disorder comes earlier when intervention can have a long-term impact in a short amount of time. A community of people empowered to rebuke shame and build body and self-esteem are more resilient to the stigmas of body size and mental health. To realize one is not alone and that there are millions of others who are struggling is empowering. Stories are shared, tears are shed, and shame is discarded. This is the power of advocacy.

References

Durso, L. E., Latner, J. D., White, M. A., Masheb, R. M., Blomquist, K. K., Morgan, P. T., et al. (2012) "Internalized weight bias in obese patients with binge eating disorder: associations with eating disturbances and psychological functioning", International Journal of Eating Disorders 45(3): 423-7. Goffman, I. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood

Cliffs, NJ: Prentice-Hall. Haines J., Neumark-Sztainer D., Eisenberg M. E., and Hannan P. J. (2006) "Weight teasing and disordered eating behaviours in adolescents: longitudinal findings from Project EAT (Eating Among Teens)", Pediatrics 117(2): e209-15. Hudson, J. I., Hiripi, E., Pope, H. G., and Kessler, R. C. (2007) "The prevalence and correlates of eating disorders in the National Comorbidity Survey Replication", Biological Psychiatry 61(3): 348-58.

Neumark-Sztainer, D., Falkner N., Story M., Perry C., Hannan P. J., and Mulert S. (2002) "Weight-teasing among adolescents: correlations with weight status and disordered eating behaviours", International Journal of Obesity 26(1):123-31.

Puhl, R., and Brownell, K. (2006) "Confronting and coping with weight stigma: an investigation of overweight and obese adults", Obesity 14(10): 1802-15.

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