I remember standing in front of a group of parents who had just listened to me speak for an hour about my Masters research on eating disorder recovery. After some polite applause, a parent tentatively raised her hand and said to me: “it’s wonderful to think about recovery, but how can I help my child to get there?” She told me that she had quit her job to move across the country to access treatment for her teenaged daughter who was struggling with an eating disorder. Her daughter required full-time care – not in a hospital, a setting she found traumatizing and in which she had managed to gain weight, only to leave the hospital and relapse immediately – but in a caring environment where she would be supervised as she ate every painstaking bite. The family had heard promising things about family-based therapy, an evidence-based form of treatment for younger people with eating disorders, but could not find qualified practitioners. “My life,” she said, “has been turned upside down.”
I stood, immobilized in the face of my lack of solutions. This woman’s story is not uncommon. Nearly every day, loved ones and people who are struggling ask me what they can do to recover- how they can reach a state of wellness, where they can go to make the changes they want to make but are unable to enact. My heart breaks every time I talk about the reality of the continuum of care for eating disorders in Canada as it currently stands. Across the country, we have limited treatment options; at last count, there were 39 inpatient beds for those needing an acute level of care. Community supports, often the preferred model for those from racialized communities or those who have cycled in and out of treatment, face extreme funding deficits, often forced to close due to shifts away from these models. Half a million people in Canada suffer from an eating disorder – and those are only the diagnosed cases. Many more struggle without diagnosis, facing barriers to even obtaining the diagnosis that might get them in the door at a treatment program. Stereotypes and stigma about who might suffer from an eating disorder leads to a pregnant silence around these ubiquitous and often fatal disorders. Eating disorders are a family illness – not because parents are the cause of eating disorders, a contention debunked long ago – but because they impact everyone in a sufferer’s life. Across the country, families are struggling to understand eating disorders and how to support those they love. Frustrated with their lacking options, they are gathering on social media and in person to start moving toward actionable solutions.
I have always been social-justice-minded: one of my earliest forays into eating disorder research was an exploration of how we might understand eating disorders as a social justice issue, due to the many barriers to care that exist for those who do not fit the expected presentation of eating disorders (i.e., those who are marginalized along the lines of their ethnicity, socioeconomic status, gender, body size, etc.). As I have become increasingly engaged with the eating disorder advocacy and activism community, however, I have been galvanized by the real stories of those who are let down by our current continuum of care for eating disorders.
My research centres around recovery, which may seem a lesser concern in the face of these serious issues with access to care for eating disorders. However, through my work as the Co-Chair of the Waterloo-Wellington Eating Disorders Coalition, in my writing for the popular blog Science of Eating Disorders, and in interactions with the people who disclose their struggles or those of their loved ones to me every single day, I have seen how hope for the future can be a powerful thing. I strongly believe that understanding recovery in a more complex, situated, systemic, and relational way can help us to build supportive systems of care that are accessible, timely, and appropriate for the complexities of the people who seek them. In my research, I aim to better understand what recovery means to diversely embodied (i.e., people from different ethnicities, socioeconomic statuses, genders, body sizes, etc.) sufferers and their families. I contend that by sharing lived experiences of recovery in the form of digital stories (short films about lived experience created in a facilitated workshop) we can create spaces for engaging in productive dialogue between healthcare providers, policy makers, and those with lived experience. This dialogue can help us to understand what people and their families need in order to reach recovery.
My overall goal in all of my work is to increase access to health and wellness for diversely embodied Canadians who have experienced eating distress. Approaching eating disorders with a systemic, social justice lens allows us to look beyond a perspective that positions them as issues of individual responsibility and vanity; it allows us to begin to understand how individuals interact with social and political systems and how this impacts their health. Research, to me, is about more than simply producing scholarly knowledge. It is about deeply engaging with communities to work toward a Canada that honours diversity and breaks down barriers to access. It is about hearing the stories of those who are being let down, and, rather than being immobilized, working to create alternative possibilities.