Sharing stories from inside out gives ED nowhere to hide

Sharing stories from inside out gives ED nowhere to hide

I was a grandmother when I “came out.” The event, in 2007, was a private girls’ school information night. Until then I had lived a part-life, struggling to appear “normal” to the outside world, while battling a private, inner hell as a captive of an eating disorder.

Coming out and revealing my story publicly marked the end of 44 years of isolation and secrecy. No more hiding. I felt very nervous, standing on the auditorium stage, ready to expose myself from the inside out.

The cost of an eating disorder is immeasurable – on health, on relationships, on life itself.

My stepping-stones to healing and eating disorder advocacy was a zig-zag journey. Initially there was a lot of meandering, for I had no idea what to do or what I would find when I got there. But I felt driven to find out. Deep within I felt there must be a way out of this maze. There were many dark days, many days when I felt exhausted of hope. But I would think of my children and I would try afresh. I wanted to show my family, and myself, that I could be a mother unrestrained by an eating disorder.

Becoming an observer of our story

When emerging into the light of true self after decades of being lost in an eating disorder, there is a lot of catching up and exploring to do. For me, writing a memoir (A Girl Called Tim), was one way to continue the healing process.

Writing can be therapeutic in a self-help kind of way, for it encourages us to become an observer as well as a participant in our story. Now that I was outside my story rather than lost in it, a new world opened up.

The first person I met was Claire Middleton, founder of The Butterfly Foundation in Australia. Claire listened as I described the pain of rejection and the alienation that had occurred in my family of origin as a result of the eating disorder. I wanted to write a book so that others would know there was hope, even when families were unable to provide support. Claire suggested (insisted!) I talk with Professor Daniel Le Grange, about his research with Family Based Treatment (FBT). Being fresh on the path of enlightenment, learning about Professor Le Grange’s work with evidence-based treatment sparked the immediate thought: “I wish this support for families had been around when I was a kid”.

Getting our Kid Back

Memoir-writing went on hold. I emailed Prof. Le Grange, a world-leading researcher in the USA. He responded immediately. Flights were arranged, we met in Chicago, and together we wrote My Kid is Back. Spreading the word to parents about family-based treatment was top priority. I wanted their children to have every chance of getting their life back quickly, and for families to be unified and strengthened, not isolated and destroyed like mine, by the effects of the eating disorder.

The advocacy path is full of surprises. For instance, in helping others, I also help myself.

An illness, not a weakness

I nervously attended an eating disorder conference for the first time in 2009 – the event, run by the Australian and New Zealand Academy of Eating Disorders, was for professionals. My Kid is Back had just been released, but did I have a right to be at this conference? Did I belong? I had extensive lived experience of an eating disorder but had no letters after my name. As the keynote speakers began to describe their research outcomes, however, feelings of inadequacy and inferiority gave way to elation and joy. I wanted to stand, clap my hands and shout “You are describing my thoughts, my life!” The illness that had consumed me for decades was under their microscope. It was real; it was on stage. Healing took another step forward. I departed for home feeling understood, connected, heartened, and with a tingling sensation of fledgling self-belief.

Self-discovery is part of healing

“Coming out” has become an adventure in self-discovery. Epiphanic moments appear like shooting stars in a clear night sky. Comments like “Pull up your socks,” “You think too much about yourself,” “Why can’t you be like everyone else?” which fed the eating disorder and silenced me for years, have lost their power. I have learned to observe with clarity what thoughts and behaviors belong to the eating disorder and what belong to healthy me. Seeing the illness in the context of my life enables continued steps forward in self-restoration.

Yes, I did have a right to be at that eating disorder conference. I am actually an okay person whose life happens to have been sabotaged by an eating disorder. Sadly, this revelation has come too late for healing with my family of origin, who had labelled me “the problem,” but at least I am out of the eating disorder’s clutches. I am free.

Never too late to reach out for help

To be accepted and respected, understood and acknowledged, after decades of private struggle due to stigma and shame, is an ongoing revelation.

This support has enabled the little 11-year-old who developed an eating disorder to resurface and find her voice. That I am a grandmother by now does not matter.

It is never too late to heal.

Today I represent people who are experiencing eating disorder symptoms, and their families, on national and international organisations, including the NEDC, F.E.A.S.T. and the AED.

Everyone deserves a full life, including you

Since I “came out” 12 years ago, I have written and co-written nine books on eating disorders, and am writing another two. I love helping people share their illness stories so that they can make their experience count, and so others may learn from their valuable lived experience.

My wish is to see the creation of more supportive health care environments to enable home-based, patient-centered and family-centered healing. Everyone in the family is affected by an eating disorder and, for the best outcome, everyone needs to be involved in the healing process.

Look for the person beyond the eating disorder. Treat them with respect, and help them find their voice. Remember, the eating disorder loves, and thrives on, secrets. So, no more secrets. No more stigma, no more shame, no more isolation or part-lives. Everyone deserves a full life. Including you.

To share your story, email me on june@junealexander.com