Expanding our Potential for Healing from Eating Disorders through Diversity of Perspectives and Lived Experiences

The first time I read about queer women and women of color with eating disorders was in 1995. I was in grad school, interning at an eating disorder clinic, and a friend of mine who knew I was a biracial queer woman who had battled anorexia recommended the book A Hunger So Wide and So Deep, by Becky W. Thompson. To say that this book resonated with me doesn't even capture what happened. It did more. Reading those stories, I felt seen, validated and soothed... and it was everything to me.

The book is centered around the testimonials of queer women and women of color and their personal experiences with eating disorders. Their stories describe how parents and families who immigrate are responding to racism through anti-fatness. They identify the same confusion and mixed-messaging that I had received as a young person growing up in a biracial household. This book goes beyond the mainstream idea that eating disorders mostly happen to white, hetero, affluent, cisgender, able-bodied, neurotypical girls and integrates the impact of racism and oppression on eating disorders.

Until that point, I truly felt that there was something wrong with me and that my eating disorder made no sense. All of the biographies and textbooks that I had read about eating disorders had not in any way mirrored my own experience. As I read the stories in Thompson's book, it made me see that my story was true and valid. I realized that peoplecould understand, and peopledo understand because they were saying my story! And that was incredibly liberating. I felt seen for the first time.

Growing up, food was a huge part of how my family honored our culture. My parents celebrated food and believed in enjoying all foods. I never saw my mom restrict her diet or only eat salads. At the same time, there was so much mixed messaging. I was encouraged to participate to enjoy the food and family traditions that centered around food and at the same time I was constantly being told not to gain weight. There was this sense of showing loyalty to my culture don't abandon us but, in equal measure don't gain weight.

Thompson's book explained the damaging confusion of these mixed messages and why it was so upsetting to me. It also gave me more understanding of my parents, and particularly my mother who was an immigrant and had experienced oppression and the anxiety of assimilation in this country.  

When my mom came to the US from Peru, she was learning English, looking for a job, and trying to assimilate. What she encountered as a brown woman with an accent, and all of the ways that our western culture regarded her, shaped in her the idea that in order to be successful and included she had to be thin. Even though roundness was celebrated in her culture, she saw that thinness was, and is, valued. Her thinking was: Of all the things that I am, if I'm thin, that can make up for it. It can be one less strike against me.

So, when I started to go through puberty, and gained puberty weight which is a natural, common, physical response to hormonal changes my mom began expressing her concern. I did not know how to make sense of these mixed messages around aspects of myself that were so personal, nuanced and vulnerable. I felt pressure and confusion around food and my changing body. Overwhelmed and angry, I began restricting my food to numb my pain and confusion. So that was how my eating disorder began.

Thompson's book sparked my life's calling my commitment to bring awareness and change to the huge gap that exists in treatment servicesfor underrepresented and underserved folks with eating disorders. Through this work, I have seen the vital role that diversity plays in the treatment of eating disorders. By bringing in different perspectives and expansive thinking to the field, we create greater possibilities for treatment and recovery for everyone. 

Historically, the field of eating disorder recovery and treatment has taken a harmful and exclusive cookie cutter approach to address these issues. The myth that eating disorders only occur in affluent Caucasian girls is damaging to marginalized communities that suffer from eating disorders. This narrow viewpoint continues to reinforce an invisibility that is experienced by marginalized communities. It also limits our ability to understand the underlying problems that cause eating disorders and diminishes the deep complexities and layers that need to be revealed for true healing to occur.

If we think that there is only one perspective, and only one solution, we lock ourselves into one way of thinking for healing and recovery and that is limiting to everyone.

Healing and recovery is personal, individual, and complex. It means different things for different people. And each person's relationship with food is also complex. By bringing in diversity, both in thinking and experience, it allows us to find new, innovative ways to approach treatment. Where in our system and society do we need to change so that recovery is more possible for more people?
Eating problems are very pervasive. They are not confined to specific populations or groups of people. With this greater understanding, we can tap into different people's viewpoints and learn how they use treatment, which grows and strengthens our understanding of what treatment is. We can say, "Let's hear your stories. Let's hear what works for you. " We can hold healing and recovery as an evolving, expansive process. The more expansive we are the more we take on different angles of healing the more we will be able to think of inclusive and inventive ways to approach treatment and recovery. As we open and expand our approach and ideas around treatment, we create a whole new wave and energy that provides more hope and holds healing from eating disorders as absolutely possible.

The invisibility of marginalized folks who suffer from eating disorders

How current treatment systems continue to be inaccessible for marginalized communities

I am a queer cisgender, able bodied woman of color who struggled with an eating disorder in my teens and twenties. My eating disorder had everything to do with a lineage of racism and oppression that my family experienced. I did not come to this realization in my treatment until I read Becky Thompson's A Hunger So Wide And So Deep: A Multiracial View of Women's Eating Problems. My eating disorder began when I was 15. I felt uncomfortable with my changing body, and had a self-worth that was hinged on feeling approval and acceptance from my peers. What I struggled with most was my identity as a biracial adolescent. My struggle was intricately tied to my mother's struggle in acculturating to the United States, where she had moved from Peru as a young single woman. She experienced the racism that many non-English speaking immigrants go through as they root themselves in this country. Though well intentioned in her desire to shield me from pain that she had to go through, some of my mother's pain over these experiences was projected onto me and contributed to my development of a fear-based emotional landscape. My family expressed concern about my changing body as I went through puberty. When I would visit my grandparents in Peru, they would use the word "gordita " with me. Gorda is Spanish for fat and Gordita is a term of affection for someone who is fat. They wanted me to be "gordita " because they wanted more of me. The word was used as a term of affection and absolutely embedded in love. When my parents began to use this word to describe my changing body, there was more anxiety and fear used with this word than affection. Yet food is a big part of so many cultures. And eating together is another community component of culture. The messages I received as an adolescent within my family were mixed. I was expected to eat and eat all the food but my changing body was concerning. I could not make sense of these messages so I chose to disconnect with an eating disorder. Stories like these were not depicted in any mainstream literature for eating disorders, yet they were shared in Becky Thompson's book of testimonials of women of color and queer women with eating disorders. It was then I could finally make sense of my eating disorder.

Eating disorders are often viewed as occurring in Caucasian, thin, affluent, cisgender adolescent girls. The way our current media portrays those suffering from eating disorders reinforces this myth. In 2017, Netflix released the movie "˜To the Bone " whose main character fits this exact stereotype from her appearance, narrative and even the way her family easily accessed treatment. It is also important to point out that the actress who portrayed the lead character with an eating disorder suffered from eating disorder years ago. She reported that she worked with a nutritionist to lose a drastic amount of weight in a "healthy " way so that she could have the emaciated body needed for this movie role. Newsflash: you can't lose a drastic amount of weight in a "healthy " way after suffering from an eating disorder. Would you ever ask a person who recovered from substance abuse to do a significant amount of substances and risk an overdose for a part in a movie or play?

Let's focus on the stereotype of an individual with an eating disorder. Here are some statistics from the Marginalized Voices project.  The National Eating Disorders Association's Marginalized Voices campaign, supported by Reasons Eating Disorder Center, is confronting the prevailing myths about who struggles with eating disorders, underscoring that everyone's experience is equally as valid and deserving of care and recovery. 

1. Black teenagers are 50% more likely than white teenagers to exhibit bulimic behaviors, such as bingeing and purging. 
2. A 2014 study found that rates of disordered eating have increased across all demographic sectors, but at a faster rate in male, lower socioeconomic and older folks
3. Transgender college students were significantly more likely than members of any other group of college students to report an eating disorder diagnosis in the past year- 2015 study.
4. Teenage girls from low income families are 153% more likely to struggle with bulimia than girls from wealthy families.
5. Only 20% of those with eating disorders fit the "emaciated body " stereotype.

The myth that eating disorders only occur in affluent Caucasian girls is damaging to the many people across all races, genders and sexual orientations in all age groups that suffer from eating disorders. This narrow viewpoint continues to reinforce an invisibility that is often felt by marginalized communities. The narrow viewpoint of who gets an eating disorder continues to limit our understanding of eating disorders and not appreciate the deep complexities and layers of eating disorders that need to be revealed for true healing to occur.

As a psychologist who specializes in eating disorders, I continue to be dismayed by how inaccessible treatment is for eating disorders. I recently participated in a retreat for women of color with disorder eating. It was held in Southern California and it was indeed an effort that involved a coming together of many people like myself to create space for women of color with disordered eating. The women described waiting for over a year for a retreat of this nature, these women also reported driving from 20 minutes to 3 hours to get to the retreat site. The question that came up for me is then what? What will these women do after the retreat. There are some incredible community efforts like the work of Gloria Lucas in Nalgona Positivity Pride, who runs an online disordered eating support group for people of color- Sage and Spoon. Yet we need more of these spaces. 

Now, let's take a look at trans folks with eating disorders.  In a large population study of college students, trans students reported significantly higher eating disorder diagnosis rates, including use of diet pills, vomiting, and laxatives use when compared to all other groups (Diemer, 2015).  Yet trans folks struggle with accessing treatment and when they access treatment for their eating disorder, their interactions with treatment was alarming. In a study of 84 trans folks with eating disorders and treatment, not one reported a positive experience, most regretted treatment even after knowing how life threatening eating disorders are. (Duffy, 2016).

Like many mental health illnesses, eating disorders treatment programs, advocates and clinicians must work together to change the current treatment landscape. All individuals affected by eating disorders need to be afforded the means, opportunities and intersectional treatment options needed for recovery.

What can you do as a clinician who does not specialize in eating disorders but sees clients with eating disorders? 

1. Learn about eating disorders from a wide varied source of information available. My website has some great resources: https://marcellaedtraining.com/resources/
2. Assess for eating disorders in all your intakes, continue to assess for eating disorders. Some clients come to see you for substance use or other self harm behaviors. Some come to see you for trauma and the various ways they are disconnected from the world. Assess for an eating disorder.
3. Ask people to tell you their experience in their bodies. Ask them what is it like to navigate in the world with the body they are living in. Most body image and eating disorders screening focus on weight and size. It is important to expand our lens on why people may engage in an eating disorder. 
4. Attend local conferences. Eating Disorders Recovery and Support (EDRS) and International Association of Eating Disorders Professionals (IAEDP) host local educational events in the San Francisco Bay Area. 
5. Apply for scholarships for your clients with eating disorders: https://marcellaedtraining.com/treatment-scholarships/

*This article was first published in Gaylesta's newsletter.- Summer 2018

Marcella M Raimondo, PhD, MPH (PSY#27037)
Psychologist, Consultant and Trainer
Pronouns: She/her
Check out my site - https://marcellaedtraining.com/
working with folks with eating problems, eating disorders and body image issues