Feb. 23, 2018, 2:13 p.m.
A few years ago, I started to reconsider whether telling my personal story of recovery is productive to the effort to reduce the social stigma and shame that has been problematically linked to eating disorders.
I am a white, cis-gender, heterosexual, middle class, thin woman. I was formally diagnosed with an eating disorder in my late teens, and accessed treatment in Ontario. For all intents and purposes, I am easily understood to be recovered. My own recovery looks the way people hope and expect a recovery might look—I am “productive” and “successful.” I enjoy food. I am seen, in this world, as neither too thin, nor too fat. My body is easy for people to digest.
My body does not challenge people’s preconceived notions of what kinds of bodies might have, and recover from, eating disorders. Telling my story has been helpful for me over the years, as I’ve made sense of my experiences and connected with others.
But, I am not content for my story to be the only story. And at present, it is not safe for many people to tell their stories of eating disorders and recovery in bodies that are less readily accepted in society. Stories like mine garner the most attention, perhaps because they are less challenging, and call for less change. Stories like mine allow people to feel that systems are working fine. But even in my story, steeped as it is in privilege, there is struggle. There is violence. There is pain.
I fully support people’s right and desire to tell their stories. Advocacy campaigns often call for this storytelling. Stories make experiences come alive for readers. They help to put a face to a struggle that can feel beyond imagining. Stories crystallize. Stories compel.
The messy realities of systems of oppression less often feature in the social imagination around eating disorders. We hear about those who make it through—and those who die. We hear less about the tricky middle ground where people cycle in and out of treatments that do not fit their needs. We are missing the moments of misdiagnosis, misrepresentation, and misunderstanding.
When we only hear singular stories, and ones that match our expectations about who gets an eating disorder, we miss out on opportunities to make change where it matters. By staying at the individual level, there are missed chances for looking at how systems of diagnosis and treatment fail people whose bodies do not fit within the narrow confines of understanding around eating disorders.
The fight for better understanding of how eating disorders can impact people of any gender, size, ability, sexuality, race, ethnicity, socioeconomic status, and more cannot take place at only the individual level. We need sustained collective, systemically-oriented efforts to attracting more public funds for eating disorder prevention, research, and treatment. More than that, these spheres need to be informed by an awareness of the diversity of eating disorders.
Stories are important, and we need them. But what we really need are stories from those who challenge us to look beyond our preconceived notions about who gets eating disorders, what eating disorders are, and how best to treat them. If we want to welcome such stories, we need to create space for them—even when this means stepping back.
If we wish for a more socially just approach to eating disorders, we need to listen—and then we need to act.
Bio: I am a PhD candidate in the Department of Family Relations and Applied Nutrition at the University of Guelph in Ontario, Canada. My PhD research was funded by CIHR through the Vanier Scholar Doctoral Award and subsequently by the Ontario Ministry of Health and Longterm Care through the Ontario Women's Health Scholars program. I have a passion for improving access to quality, accessible, and appropriate care for people with eating disorders. To me, the best way to do this is by working systemically and structurally to change healthcare policy to be more supportive of diverse experiences. I research, write, and speak about eating disorders, embodiment, and social justice in academic and community settings.