Amazing things can happen when one breaks free from an eating disorder (ED) and channels the illness negativity into positive pursuits. For instance, you can find a new ‘family’ in the eating disorder field.
In 2007, 44 years after developing anorexia nervosa, I publicly shared my inner story for the first time. My hope was that if I helped one person with an eating disorder know that they had an illness from which they could recover, this would make my own suffering worthwhile. So began the most purposeful period of my life. I became an advocate in raising awareness of eating disorders.
My stepping-stones to ED advocacy were a little like Dorothy’s path in The Wizard of Oz. There was a lot of meandering, and I had no idea what I would find when I got there. But I felt driven to find out. Emerging into true self after decades of being lost in an eating disorder, there was a lot of exploring to do. Writing a memoir (A Girl Called Tim), would be one way to help put the illness in context of my life. I began to reach out and talk to people as part of my research.
The first person I met was Claire Middleton (Vickery), founder of The Butterfly Foundation in Australia. Claire suggested (insisted!) I talk with Professor Daniel Le Grange, about his research with Family Based Treatment (FBT). I had not heard about Daniel or FBT before, for I was entering this new state of awareness, but immediately thought ‘I wish this support for families had been around when I was a kid’. I emailed Daniel with much trepidation. I was an Australian who developed anorexia nervosa in childhood, and he was a world leading researcher in the USA. Daniel responded immediately. We met, and together we wrote My Kid is Back, which features 10 Australian families and their experiences of FBT. This book took precedence over my memoir, which followed, because I wanted to tell families about FBT. I wanted them to be unified and strengthened, not isolated and destroyed like mine, by the eating disorder. From there my involvement in advocacy grew and grew.
I felt nervous and inadequate when attending my first eating disorder conference, in Brisbane, 2009 – this event was for professionals, run by the Australian and New Zealand Academy of Eating Disorders. My Kid is Back had been released, and I was rich in ED experience, but did I have a right to be at this conference? The conference theme seemed to speak to me: Broadening horizons – innovative ways to expand the breadth and reach of eating disorder services.
I felt like a mouse in the auditorium and feared I had no right to be present. All I had was AN experience that had shaped my life since age 11. Here I was, among people with many letters after their name. They were all somebody. But as the plenary session proceeded, bells began to ring, and lights began to shine, in parts of my mind that had been held captive to anorexia nervosa for decades. I wanted to jump from my seat and yell, “You are describing my life!” “You understand!”.
Listening to the keynote speakers Prof. Kathleen Pike and Assoc. Prof. Brett McDermott discuss their research outcomes, I became enthralled and excited – they were describing, and helping me to see what thoughts and behaviours belonged to the eating disorder and what was the ‘real me’.
Everything began making more sense. I did have a right to be there, and the benefits were many. I departed for home with a new sense of belonging, understanding and hope. I began to believe I was an okay person whose life had been sabotaged by an eating disorder bully. Sadly, this revelation came too late for my family of origin to understand, but at least now I was free.
Here I was, in my late 50s, for the first time meeting people who understood my “inner language”. I was now among people who accepted me as I was, inside and out. These academics and health professionals in ANZAED did not judge or refer to me as “the problem”. In their midst, I began to feel like a fledgling, gaining confidence to explore the world beyond.
The Brisbane 2009 ANZAED conference heralded the most meaningful part of my life. No more secrets, shame or stigma. My inside story became my outside story. I was one. The field of eating disorders has nurtured self-belief and filled a long-held need and yearning for a sense of belonging and connection. Involvement in advocacy, in Australia and internationally, has filled the ghastly gap left by the illness.
The field of eating disorders is, for me, a second family that meets a need beyond the scope of my immediate family of four children and five grandchildren. This second family comprises researchers, clinicians, and people with ED experience, who understand and help me to feel at peace with the illness that robbed me of decades of life. Attendance at eating disorder conferences or gatherings provides an essential injection of wellness that enables ongoing healing.
I’ve written 10 books and my Phd produced Using Writing as a Therapy for Eating Disorders – The Diary Healer. I am a steering committee member, representing ‘the voice of lived experience’, on the National Eating Disorder Collaboration (NEDC). I advocate for improved access to health services for people with eating disorders through www.lifestoriesdiary.com, and am a writing mentor for people in recovery.
None of this would have happened if not for attendance at that 2009 Brisbane conference!
The 2022 ANZAED Sydney Conference this week marks the 20th anniversary of the Australian and New Zealand Academy for Eating Disorders (ANZAED) annual meeting. Besides celebrating achievements over the past two decades, the ANZAED Conference in Sydney, August 11-13, will focus on broadening horizons and embracing the challenge of increasing the reach and effectiveness of eating disorder prevention and treatment into the future.
Going forward, I urge ANZAED to continue to welcome and encourage inclusiveness in the ranks of membership – we all need each other. The answers to the causes of eating disorders will be found in the people who have developed the illness and in the people who care for them. Encourage patients and families to share their stories, listen to them and learn from them. Collaboration and transparency between health professionals, researchers, patients and caregivers is vital. The best outcomes occur when trust prevails and all have faith that ‘at every age, recovery is possible’.
Thank you, ANZAED, for all that you do, to save people like me. You are like ‘a second family’, who helps us to feel safe, secure and hopeful.