A Word About Eating Disorders Advocacy
F.E.A.S.T., as you may know, is an international, non profit, volunteer run organization governed by a Board of Directors. In addition, however, to the informed guidance of our Board of Directors, F.E.A.S.T. benefits greatly from the consultative expertise of a group of international professionals and allies who sit on our Advisory Panel. We will, over the course of the next few Mondays (14 actually), be introducing them to you all…so, please, keep checking in. Our first introduction in the series is to journalist, author and advocate, June Alexander. June has graciously agreed to be introduced through an “Advocacy Interview”:
1. How did you find your path to ED Advocacy?
In 2007, 44 years after I developed anorexia nervosa, for the first time I publicly shared my inner story. 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 fulfilling, contented, purposeful period of my life. I became an advocate in raising awareness of eating disorders.
The stepping-stones on my path 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 Foundationin Australia. Claire was very helpful. I shared my story with her, and explained that I had become alienated from my family of origin during my long struggle with my eating disorder. I wanted to write a book so that others would know they were not alone and that 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). 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 unknown, more than middle-aged, woman who had happened to have an eating disorder since childhood, living in Victoria, Australia, and he was a world leading researcher in the USA (at the University of Chicago at the time). Daniel responded immediately and said he would be pleased to meet. I flew to Chicago, we met, and together we wrote My Kid is Back. Writing this book took precedence over my memoir, which followed, because I wanted to do all I could, as quickly as I could, to let families know about FBT. I wanted families to be unified and strengthened, not isolated and destroyed like mine, by the eating disorder. From there, I began to meet people, online, and at conferences, and my interest in and involvement in, advocacy, grew and grew.
I felt nervous and inadequate when attending an eating disorder conference for the first time, in 2009 – it was for professionals, run by the Australian and New Zealand Academy of Eating Disorders. My first book on eating disorders, My Kid is Back, had been released, and I was rich in experience of an eating disorder, but did I have a right to be at this conference? Listening to the keynote speakers discuss research outcomes, I became enthralled and excited – they were describing, and helping me to understand, my life. My illness seemed to be under their microscope. Talk about light bulb moments – they were everywhere. I began to clearly see what thoughts and behaviors 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 yes, the benefits were many. I departed for home with a new sense of belonging, understanding and hope. I began to believe I was actually 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.
Another person among the many who were especially helpful wasF.E.A.S.T. founder, Laura Collins Lyster-Mensh. To be accepted and respected, understood and acknowledged by people who knew my illness story, after decades of silence due to fear of stigma and shame, was akin to walking into the sunshine after years locked in the dark. Thanks to Claire, Laura, Daniel and a host of others, the little 11-year-old who developed an eating disorder, became lost for decades and resurfaced in her mid-fifties, was finding her voice. That I was a grandmother by now, did not matter, did not matter at all.
2. How do you define advocacy/what does your advocacy work entail?
Through advocacy work I learnt:
* Helping others helps myself.
* Sharing my story helps others feel it is okay, safe, to share their story (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, doing voluntary work, far surpasses 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 like-minded people (researchers/people with eating disorders/carers) who share the same passion for increasing awareness of eating disorders gives the feeling of belonging, of being connected, understood and accepted, and worthwhile. In short, meeting like-minded people is like 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 like an injection of well-being, a booster against relapse.
* Evidence of life experience DOES count.
* Passion cannot be learnt. It 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, giving eating disorders nowhere to hide.
* Advocacy is the bridge on which knowledge travels from researcher to treatment centres, from an evidence-base to a health provider, from an academic paper to a GP, from a non-profit eating disorder support organisation to families, from all of these, to you.
Excitingly, I am member of the steering committee organizing the inaugural World Eating Disorders Action Day on June 2, 2016. To know that the illenss which suppressed and silenced my authentic self for more than half my life, is having the light shone on it, globally, is deeply heart-warming and encouraging.
Maybe for me, advocacy has filled the gap that the eating disorder left in my life…the big difference is that advocacy is everything the eating disorder is not and herein lies a world of difference. Advocacy is about togetherness, sharing, belonging, connecting and believing; it is about being positive, about doing, about making lives and our world a better place. Advocacy is about being open and unified; an eating disorder is about being secret and isolated. Advocacy. I love it.
3. What changes do you hope to affect?
Above all, I hope to help people understand what it is like to have an eating disorder and to do what I can to encourage healing.
Writing is my sword against the eating disorder!
My passion for writing had been the only part of Self not sabotaged by my eating disorder. My writing passion had developed before my eating disorder and clearly belonged to the true me. When I felt recovered, in my mid-fifties, I began using my pen to shine light on this illness. I steadfastly believed that to beat the eating disorder bully, I needed to put it in the light – give it nowhere to hide.
After I began sharing my story and attending eating disorder conferences, in 2009, amazing things began to happen – and I began turning the power of the eating disorder on itself.
Family, friends, treatment team and researchers encouraged self-belief, and with their support, I continued to take steps forward in the way I felt most comfortable – writing. Seven books in nine years. Margaret McAllister, Professor of Nursing at CQUniversity, Queensland, had heard me speak about my ED journey, with Professor Janet Treasure, at the 2013 At Home with Eating Disorders conference in Brisbane. Prof. McAllister, together with Professor Donna Brien, from the university’s School of Education and the Arts, phoned me at home shortly after, to encourage me to apply for PhD candidature.
‘What?’ ‘Me?’ I exclaimed, embarrassed to reveal my low level of academic achievement. Undeterred, they convinced me to try. Intrigued by the fact that journaling had helped me survive my eating disorder, they were interested to know if this had helped others, too, and why. The professors’ thoughts aligned with mine – by now I had learnt that, like me, adults with eating disorders, even though high-functioning in careers, motherhood and other aspects of life, often felt ‘faceless’, like they ‘didn’t count’, like they were ‘a problem’; comments often left them feeling ‘unacknowledged and unaccepted’. Such feelings obviously fed the eating disorder and compounded the challenge of recovery.
On my daily walks by the seashore, a new book concept began to take shape – that of sharing of the ‘inside story’ of living with an eating disorder – to help other sufferers, and also help carers and health professionals understand what this illness was about. My diary had helped me – but what about others? The seed for the concept for Using Writing as a Therapy for Eating Disorders _The Diary Healer was born. This book is due for release mid-2016 and my PhD is almost complete.
Therefore, my journey has taken me from patient, to advocate to researcher. We need more evidence-based care and we need to look for new solutions. My particular interest is in narrative medicine, because writing played a vital role in both my survival and recovery from my illness. This path is one in which I feel fulfilled and purposeful, knowing the this is the best way I can help others and effect change that will enrich and save lives. Writing a diary helped me to survive my eating disorder. Now writing is helping me to help others. See details: https://www.routledge.com/products/search?keywords=june+alexander&range=all
4. What are some of the challenges/frustrations inherent in ED advocacy?
I come from the ‘sufferer’ or ‘person with the eating disorder’ background, and over recent years I began to wonder why more people ‘like me’ were not at eating disorder conferences – which I always find helpful and nurturing – and indeed, why are they not more active in demanding better access to health services and so on.
Part of the reason may be that the illness, which affects unknown thousands is, by nature, isolating and secretive. Therefore, people are reluctant to put their hand up.
Another part of the reason may be that people with an eating disorder just want to try and pretend it is not there; they want to try and live ‘normally’, even if it is only until the next crisis hits; and thirdly, often people, who have done the hard work of recovering from an eating disorder, don’t want anything to do with eating disorders ever again…they understandably want to focus on catching up on ‘real’ life.
I have experienced all these feelings. And I do know, that fronting the illness and keeping it in the open, is the best way to gain freedom and move on. For instance, people with eating disorders can help themselves and others by taking part in research programs.
I was delighted to help Professor Cynthia Bulik launch the Anorexia Nervosa Genetics Initiative (ANGI) program in Australia, in 2013. Donating a blood sample to help find a cure for anorexia was one of the happiest days of my life. For more about this amazing research project, seehttp://www.med.unc.edu/psych/eatingdisorders/our-research/angi.
We all – researchers, treatment providers, advocates, carers and … yes, people with eating disorders – have a role to fulfill in the quest to understand, treat and prevent eating disorders. When a problem needs solving, it helps to have contributions from diverse problem-solvers whose experiences and approaches differ. Each person and institution in whatever capacity has a crucial and different role to play in eradicating “Ed”. A solution cannot be discovered in a vacuum.
So, an ongoing challenge and aspiration for me has been, and continues to be, to help create a safe and supportive environment, and a voice, for people with eating disorders, and to seek more opportunity for them to contribute the invaluable knowledge that comes with experience, and to benefit from the knowledge of others. We owe this to one another – expert, clinician, carer and patient alike. As one patient said: “For without the patient, what purpose will you have?” Patients are people. They are a person who happens to have an illness called an eating disorder.
For more on this topic, see this article: http://www.junealexander.com/2013/04/sufferers-an-untapped-resource-in-the-field-of-eating-disorders/
5. What are the top 5 things you would share with a family facing a new diagnosis?
* Stay hopeful at all times and never, ever give up. Learn as much as you can, acquire coping skills and remain vigilant. This applies not only during re-feeding but also when recovery seems nigh. Our brain can take a long time to heal. Remember that appearances can be deceiving. Even when we look ‘normal’ an eating d
isorder may be simmering underneath.
* Remember during the hardest times, that your loved one who has developed this illness is still ‘there’, beyond the layers of the eating disorder, and your unconditional love will be a source of strength to them.
* When you feel unwanted, unappreciated and spurned by your loved one’s behaviour, remind yourself that the manipulative illness is driving these behaviours. The authentic person that you knew and loved before the illness developed needs your understanding and love, together with guidance from the treatment team, to heal and be ready to re-engage in the mainstream of life.
* Get involved in an online support group, like F.E.A.S.T., and in a community support group as well, if you can, because sharing with others going through the same experience, or who have been through the same experience, can be very helpful. Remember, knowledge is power.
* Being a carer for a child or partner with an eating disorder is more involved than regular day-to-day running of a family or household. Your loved one needs and deserves support, and so do you, for an eating disorder affects everyone in the family. By learning skills on how to confront the illness on your loved one’s behalf, refusing to give in to the illness manipulations and learning how to interpret what is being said or not being said, and taking time out to maintain a semblance of normal life, you will be helping to smooth the pathway to healing, and strengthening family unity.