By Annie Robinson

Eating disorders are some of the most misunderstood, stigmatized, yet pervasive struggles in our contemporary culture. People of all genders, ages, and backgrounds are affected – nearly 30 million individuals in the United States alone, according to the National Eating Disorders Association. Yet even the labels that situate those who struggle into a diagnostic categories – most commonly anorexia nervosa, bulimia nervosa, binge eating disorder, or eating disorder not otherwise specified – are themselves stigmatic, ill-defined, and misleading, because they fail to capture the nuances in people’s unique experiences.

Eating disorders thrive in secrecy, and when exposed, the struggling individual is often judged, blamed, and alienated. But the only way to heal from an eating disorder is to bring it into the light. “Coming out” about an eating disorder is a radical act of courage, and of advocacy. Bringing it into the light exposes it, shrinks it, and facilitates the crucial “me too!” moment of connection with others that is the backbone of healing. It is an act of and for recovery.

As a graduate of Columbia University’s Master in Narrative Medicine program, I believe that narrating our experiences – orally or in writing – is an invaluable means of understanding, healing, and transformation. I am proud to “come out” about my own eating disorder, and honored to be doing so in tandem with several extraordinary comrades on the recovery path. The individuals who have chosen to share their stories for this series are some of the wisest and most courageous women I have ever met. They are my teachers, my supports, and my sisters. Their tales are ones of honesty and insight, which motivate me to keep moving forward in my own recovery. I hope they bring comfort, clarity, and hope to listeners.

This series is founded upon the premise that exchanging tales of vulnerability and shame is essential for healing, and so I will begin by bringing my own story into the light.

For years, I masked my eating disorder in a shroud of shame. I spoke of it as something I had been through in the past – when really, it was always seething beneath the surface, influencing every decision I made.

My eating disorder developed when I was 13, for a plethora of reasons: trauma, grief, fear, transition, insecurity. Over the years, I have engaged in the full spectrum of behaviors: restricting, purging, binging, compulsive exercising, obsessing, ritualizing. While diagnostic categories can feel validating and helpful for many people – as at times they have for me – I also have felt such classification to be limiting, reductionist, and counter-productive to my healing. I've found it matters less which diagnostic labels fit the behaviors, and what matters more is what the behaviors reflect about my core beliefs, fears, and unmet needs.

I ebbed and flowed for many years between being in a severely compromised condition to being semi-stable – but my eating disorder was always a central part of me. It was an identity I clung to and relied on – though also resented.

I was told I would have my eating disorder “for life.” For life. I was first given this extreme but quite common prognosis as an impressionable adolescent. It was a formative message I carried with me for the next 15 years. It was a shameful identity, but one that I held onto tightly, as it sometimes felt like the only constant thing in an ever-changing world.

I’ve encountered many individuals who developed eating disorders in their youth who were also told that their condition was chronic. The consequences of this message are dire. It leaves no room for believing in the possibility of freedom, of wholeness, and of manifesting one’s potential. For me, the notion that I would inevitably carry my eating disorder around with me – to greater and lesser degrees – throughout my life exacerbated my dependence on it. If the doctors said it was so, so it was.

But – what if that’s not necessarily true? What if total freedom is actually possible? What if I could one day transcend the ambiguous space of temporary “remission” and fully recover?

In 2014, the paradigm I had operated within of “eating-disorder-as-chronic-illness” was flipped on its head. I had hit yet another severe low in my physical, emotional, and spiritual health, and set out to explore treatment centers for the fifth time in my life. But this time would be different, because I discovered a place called Monte Nido. It was founded by a woman who herself is fully recovered after a long struggle with anorexia, and many of their staff members are also recovered.

In the biomedical model of eating disorder treatment, the term recovery is often considered analogous to remission. Remission is defined as “a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.”

What I have learned is that being “in recovery” is not the end of the road – it’s the path. It may take years and years, but anyone who suffers from an eating disorder can reach a state of being fully recovered. This philosophy is unique, and radically empowering.

I don’t know firsthand what this Land of Recovered is like. I am many years from it still. But I have been traversing the path of this new conceptualization of recovery for over a year, and have never been happier, healthier, and more filled with faith.

In my conversations with the remarkable women I interviewed, we cover an extensive range of topics: how it felt to identity as a patient; the transition out of treatment into the raw, uncharted territory of life-in-recovery; the impact that our eating disorders, and then our recovery, had on family and friends; the fundamental need for community and connection in the healing process; the misconceptions that most aggravate us, that we work hard to dispel as part of our recovery; intimacy deprivation in the throes of an eating disorder, and the blessed restoration of intimacy that comes in recovery; our eating disorders as spiritual crises, and how spirituality and belief in something greater can serve as a powerful antidote to the eating disorder we worshipped for so long; the secondary gains of our eating disorders; the liminal space of early recovery, between our past lives that were dominated by the eating disorder and our future lives when we hope to be truly free; how getting better is an act of self-care, which is a responsibility we have to fulfill both for ourselves and for our loved ones; what helps in recovery, and what gets in the way…

And most of all, in sharing and receiving each other’s stories, we affirmed that we are not alone. Knowing you are not alone is absolutely essential in recovery. As Shannon Cutts wrote in her book Beating ANA: “Our most powerful resource for healing, survival, and revival of life continues to be each other.”

Thus, I have gathered these inspiring voices of individuals whose journeys to health and wholeness intersected with mine. I hope their stories, which will be featured here on the Endangered Bodies NYC blog over the next number of months, encourage others who are struggling with eating disorders to step out of the shadows, and into the light. May we all feel less alone, more empowered, and ever hopeful that this road leads to recovery.

This piece was previously published on Health Story Collaborative, where you can find more information about what you've read here.

About Annie

I have experienced the powerful effects stories have in healing as both a patient and a caregiver, which has inspired my driving mission in life: to elicit, honor, and attend to stories.

I hold a Master of Science in Narrative Medicine from Columbia University, and designed a major entitled "Stories of Self: Realization, Empowerment, and Wellbeing" as an undergraduate at New York University's Gallatin School of Individualized Study.

My clinical role as a full-spectrum doula entails supporting women through abortion, miscarriage, and fetal loss. I am also the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge in everyday life.

Additionally, I curate an oral narrative project called Inside Stories: Medical Student Experiences for which I interview medical students about their experiences in medical school, with the intention to provide a platform for their own person healing, self-realization, and empowerment through the sharing and receiving of personal stories.

As Program Officer for Health Story Collaborative, I conduct interviews, edit audio stories, and write blog posts that profile remarkable individuals committed to honoring and making use of stories in healthcare. If you or someone you know might be interested in sharing their story, please contact me at arobinson@healthstorycollaborative.org.