Stories have a role in evidence-based science

Stories have a role in evidence-based science

Stories have a role in evidence-based science

June (Australia) and Vladislav (Russia) sharing stories in New York

By June Alexander
Increasingly, stories have a role in science. For instance scientific eating conferences are becoming a sounding board for stories of recovery and ongoing healing. This month I attended the 26thinternational conference on eating disorders, convened by the Academy for Eating Disorders(AED). This year, more than 1400 registrations set a new attendance record and equally excitingly, participants came from 49 countries. This is a good time to reflect.
When I began to recover from the four decades of my life imprisoned in an eating disorder, I likened my existence to that of a cicada. I visualized myself buried for years underground, alone in the dark. I lived and yearned for the day when I would burst forth into the brilliant sunshine, shed my shell and sing, if only for a brief time, in a leafy tree fanned by a summer breeze.

Awakenings in ‘coming out’
Breaking free in 2006, I embraced the light in cicada-like fashion, and in 2007 shared my eating disorder story for the first time in public, at a girls’ school. In 2009 I attended an eating disorder conference for the first time. Nervously coming out of my shell, I was in deep awe of the health professionals and the researchers, whose stories illuminated my brain like shooting stars. To hear my personal experience being described openly by others was an awakening, casting fresh understanding on my long incarceration with the illness.
I returned home from that first conference, convened by the Australian and New Zealand Academy for Eating Disorders, with self-belief nurtured and healthy self strengthened. The story suppressed within me for 44 years, was ready to come out.
The following year I attended an AED conference, in Salzburg, Austria. This year’s NY conference marked my sixth such attendance. I also have attended more ANZAED conferences, and conferences with non-profit organisations which include Beat in the UK, NEDAand the USA and the NEDCand Butterflyin Australia. Every conference, without exception, includes story-telling.
Like the cicada, I have spread my wings, and become noisier, transitioning from the quiet attendee to nervous presenter to confident and vocal advocate. My presentations always involve stories of struggle and recovery, and the lessons from these stories.

The heart and soul story-tellers
Stories come from people with illness experience and people who have been caregivers for people with the illness. Excitingly, a chorus is gathering and, like the cicadas, is creating a din. The chorus advocates change that will save lives.
When we share our stories, others feel they have permission to share their story too. Such healing outcomes are priceless, because the more we share stories and bring eating disorders experiences into the light, the less opportunity eating disorders will have to isolate and incarcerate those vulnerable to the illness.

The benefits of around-the-clock storytelling
Storytelling guides, mentors and peer supporters have a unique skill. They have lived with the illness 24.7, often for years, and they know the vagaries of eating disorders, or whatever the challenge is, from the inside out.
They help to fill in the difficult gaps between therapy sessions. They can help to interpret and translate eating disorder thoughts and behaviors for both the patient, the caregiver and the health professional, and assist in developing healthy-self thoughts and behaviors.

The many benefits of story-sharing
There is another equally valuable benefit. Simply, in giving, we receive. Every time we help someone by sharing our story, and drawing on our experience to ease their struggle, we also help ourselves. Both lives are uplifted and enriched. I witness this time and time again.
A note from June
Would you like to share your story? I encourage you to get in touch with me through the Contact button on


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