Discovering liberation and healing through story-sharing and advocacy

Discovering liberation and healing through story-sharing and advocacy

My heart is singing as I write this diary entry to share with you. Today, I will describe my transition from being someone who ‘felt different’ from others and for decades lived much of my life in secrecy and shame, to becoming an advocate in raising awareness of eating disorders. Ten years ago, I publicly shared my illness story for the first time. Until then, my story had been shared only in the deeply private sanctuary of my personal diaries.

My vision in ‘coming out’ and sharing my story was that if I could inspire others with an eating disorder to believe that they too could recover, this would validate my own struggles. So began the most fulfilling, contented, purposeful period of my life.

Stepping-stones

The stepping-stones to advocacy involved much meandering and I had no idea what I would find when I got there. But I felt driven to find out. After decades of being lost in the eating disorder, there was a lot of exploring to do. Writing a memoir, A Girl Called Tim, was one way to help put the illness in context of my life and engage in mainstream – not as someone with a hidden illness, but standing tall as a whole person. I began to reach out and talk to people in the eating disorder field as part of my research. Claire Middleton (Vickery), founder of The Butterfly Foundation in Australia, encouraged me to write my story and engage in the field.

I felt nervous and inadequate when attending my first eating disorder conference in 2009 – it was for professionals, run by the Australian and New Zealand Academy of Eating Disorders. My book with Professor Daniel Le Grange on Family Based Treatment, My Kid is Back, had been released, but it took time to push aside the years of negative conditioning by the eating disorder and to start believing that yes, my experience could count in the researchers’ search for answers.

Discovering liberation

Moving away from the clutches of the illness and engrained associated shame and stigma, which had suppressed my true self in a prisoner-like state for decades, into an environment where researchers were openly discussing these struggles was liberating. My excitement mounted as I realized the researchers were describing and helping me to understand me. They were not saying I was weak-minded, or that I needed to ‘pull up my socks’ and get on with life. To be among others who knew all about my illness and yet accepted me was incredibly uplifting. Epiphanies abounded. I began to clearly see what thoughts and behaviors belonged to the eating disorder and what was the ‘real me’. I began to develop a new sense of true belonging, understanding and hope, and a belief that I was actually an okay person whose life had been sabotaged by an eating disorder bully.

Healing continues

Sadly, this revelation came too late for my family of origin to understand; perceived as the only one in the family with ‘a problem’, I had to proceed alone, with my treatment team, in the healing process. This loss of childhood family remains the greatest and saddest loss caused by my eating disorder, but as healing has progressed, I have been sustained and rewarded with a new and supportive ‘family’ in the eating disorder field.

F.E.A.S.T. founder and parent-caregiver, Laura Collins Lyster-Mensh, is among many people who have been especially encouraging as mentors.

With support in a safe environment, the little 11-year-old who developed an eating disorder and became lost in its darkness for four decades resurfaced and found her voice in the light of life.

How advocacy has helped me

Advocacy helps to fill the gap that the eating disorder left in my life. The big difference is that advocacy is positive: it is everything the eating disorder is not.

• Advocacy is about togetherness, sharing, belonging, connecting and believing.
• Advocacy is about being optimistic; it is about doing and persevering to make lives and our world a better place.
• Advocacy is about being open and unified; an eating disorder is about being secret and isolated.

Advocacy is a two-way street

• Helping others helps myself.
• Sharing my story helps others feel it is okay, safe, to share their story too (sometimes after many years of suffering in silence).
• Sharing my story helps people see that they, too, can recover.
• The satisfaction and sense of connection that comes with getting involved, being a volunteer, far exceeds the level of contentment that comes with paid employment.
• In helping others, in pushing personal boundaries, a reward in personal growth always follows – in often unexpected, surprising and soul-enriching ways.
• Meeting others (researchers/people with eating disorders/caregivers) who share the same passion for increasing awareness of eating disorders promotes a sense of belonging, connection, understanding, acceptance, and worthiness. The feeling is one of being at home with a supportive family – in which there is no place for secrets or pretensions, and everything is shared.
• Attending conferences and support groups, listening to others, sharing with others – is an injection of wellbeing, a booster against relapse.

Lessons through advocacy

• Evidence of life experience DOES count. Yes, this includes YOU and your story.
• Skills can be learnt; passion cannot. Passion comes from within. Alone, we have one voice; together we have a shout.
• Eating disorders thrive in the dark and on secrets. Advocacy is about shining a light, speaking up, and giving eating disorder thoughts nowhere to hide.
• Advocacy is the bridge on which knowledge travels from researcher to treatment centers, from an evidence-base to a health provider, from an academic paper to a primary care physician, from a non-profit eating disorder support organization to families, from all of these, to you, and from you to them.

Special moments

My role as an advocate has grown to include involvement with national and international organizations. At every level, there is a growing awareness and acceptance that the patient’s voice, and the caregiver’s voice, counts.

Two special moments, among many, include helping to organize the inaugural World Eating Disorders Action Day on June 2, 2016, and receiving the 2016 AED Meehan/Hartley Award for public service and advocacy in the eating disorder field.

Share your story

Are you an advocate already? If so, I encourage you to write and share your story of why and how you became an advocate, and what your experience has been.

Become an advocate

Do you feel ready to explore what being an advocate might mean for you? In stepping forward, either as a person with lived experience or as a caregiver, organisations are ready to welcome and help you navigate your way. These organisations include:

• Eating Disorders Coalition
• NEDA
• The Butterfly Foundation
• Beat
• F.E.A.S.T.
• AED

This is a small start. There are many other eating disorder support organizations, in many countries.

Remember, in giving we receive, and together we can make a difference. Every voice, including your voice, counts.

Contribute an entry

Dear Diary is an open diary. You are warmly invited to add an entry about your advocacy experience through the comment section below.

Your friend in diary writing,

June