National Eating Disorders Association

Of Papyrus and Pottery: Learning to listen to the marginalized voice.

Norman Kim, PhD, National Director for Program Development Reasons Eating Disorder Center and Center for Change

In thinking about trying to alleviate some of the tremendous suffering that comes with struggling with an eating disorder, there is nothing more urgent than earlier recognition and identification of those at risk. Early intervention is essential to a better prognosis for those affected—and nowhere is this more important than those struggling with eating disorders who are further marginalized by virtue of not “looking” like the typical someone with an eating disorder. Which brings us, obviously, to papyrus.

One of the first-known attempts at connecting symptoms to prognosis and treatment is also one of the oldest written documents in existence, the Edwin Smith Papyrus. It was one of the first medical treatises of the ancient world, dating from 1600 BCE in ancient Egypt. Papyrus is also part of the history of ostracizing people. The word ostracize comes from ancient Greece and refers to the shards of broken pottery, ostraka, that were used as tokens when citizens were voting on whether someone should be banished from Athens—a meaning which lives on in our current use of the word. Pottery was used because it was virtually free and considered okay to “throw away,” and Egyptian papyrus was too valuable to be used for this purpose.  

There is a clear parallel in the connection between this sense of lack of worth and ostracizing or marginalizing someone, depriving them of full participation in society. This connection is all too real and present for those struggling with eating disorders who feel additionally marginalized and voiceless.  

To be marginalized is to be relegated to the fringes. It is the experience of exclusion from the opportunities and resources available to others because of some “difference.” It is the state of being disenfranchised and results in a prolonged sense of “I’m not as important,” “it’s ok for me to be thrown away,” “I deserve to be ostracized.”

We still hear and see certain myths about who suffers from eating disorders (and who doesn’t…), even among professionals and specialists. Most people still think about eating disorders as being a disorder of thin, privileged, white young women. That’s the picture that accompanies magazine articles about eating disorders because it’s the picture that sells and it is now the picture that pops into most people’s heads when they hear the term “eating disorder.” 

But it is clear that eating disorders do not discriminate.  

People of all ages, nationalities, skin colors, genders, gender orientation, sexual orientation, weights and incomes suffer at rates as high or, in some cases, higher than the stereotypical picture. People of color, our brothers and sisters in the LGBTQ community, men, older people and people struggling with binge eating all share the pain, fear, shame and loneliness that are core to all eating disorders. But especially when you are already part of a minority or disenfranchised group and spend every day feeling like the perpetual “other,” the additional stigma and feeling of “not belonging” even to the community of people struggling from the same illness can magnify the feeling of being marginalized and pushed to the fringes, an exile among exiles.  

According to Dr. Cynthia Bulik, a leading eating disorder researcher and advocate, the most common presentation of an eating disorder is a Caucasian, Latina or African-American woman in her 30s or 40s with binge eating disorder. That is not the picture we see on TV or in the media. Men with eating disorders have long been misunderstood and underdiagnosed, as well as having to deal with the stigma of having a “woman’s” disease. Being a person of color or LGBTQ does not somehow make you immune from suffering from this illness.

So even though the rates of eating disorders across all of these groups are significantly higher than previously thought, most of these groups don’t use mental health services nearly as much, and many of these groups face significant barriers to accessing healthcare services even when they need them. Only about 1 in 10 people with eating disorders receive treatment and only a third of those receive treatment from specialists. These rates are even lower for people in these marginalized groups.

But before treatment can even begin, people struggling with this illness must be recognized and identified. Imagine suffering from the tremendous fear, pain and isolation that lie underneath the eating disorder behaviors and being told that “you don’t look sick,” or that you shouldn’t have an eating disorder because of your age, weight or skin color.

Now imagine if we could recognize this struggle earlier. Even early, subthreshold presentations of eating disorders can be associated with health impairments, physiological complications, psychological distress and impairments in functioning. Failing to recognize or consider a diagnosis of an eating disorder because it might be presenting in a person who doesn’t fit the mold can lead to serious consequences and worse outcomes.

I have great hope that with proper education and advocacy, we can do a better job of recognizing these struggles earlier in all people who are suffering. Just by opening up our minds a little and challenging some of these myths, all of us on the front lines can effect a great deal of change in trying to alleviate some of the suffering that occurs when someone is struggling with an eating disorder.

There is a wonderful creation myth from the Kabbalah that I like to use—like the origin of ostracizing, it also involves broken pottery. The myth of “The Shattering of the Vessels” says that in the beginning of time, all of the light of the universe was contained in 10 vessels, which broke open, scattering the broken pieces everywhere. Unlike ostraka, the worthless pieces of broken pottery, these broken pieces are the priceless souls of the world.

The most important role that caregivers, loved ones and professionals can have is to be the holders of hope for someone who is struggling with an eating disorder, from whom hope has been taken. For those who are further marginalized and who might feel especially voiceless, we all have some responsibility in working to recognize the universality of eating disorders, and reminding all of us something important about broken things.

The Marginalized Voices Campaign, a collaboration between the National Eating Disorders Association and Reasons Eating Disorder Center, confronts prevailing myths about eating disorders, underscoring that everyone’s experience is valid and deserves care and recovery.