I developed Anorexia Nervosa more than 50 years ago, when the illness was scarcely understood or recognized. For decades, throughout a long and lonely battle to recover and regain my life, I yearned to see eating disorders brought into the light, to be acknowledged and challenged. For me, the At Home with Eating Disorders conference in Brisbane, May 2013, was a dream come true.
If my parents had opportunity to attend such a conference in 1962, when my eating disorder developed, there is every likelihood my illness would have been short-lived, and our family would have been united and strengthened through embracing collaborative evidence-based care and treatment. My parents needed to understand the illness so that they could help, rather than hinder, recovery.
To see parents, teachers, clinicians, researchers, at the At Home with Eating Disorders conference warmed my heart. That these people cared enough to come meant that eating disorder patients would benefit from the skills, knowledge, optimism and hope that would be taken home at the end of the conference.
As one of the three originators – together with Bridget Bonnin and Elaine Painter – of the conference dream, I look forward to another conference, and another and another. For we have just skimmed the surface in Brisbane. We need more outreach, more support for families across Australia – and for that matter, in every country around the globe.
I think of the families who wanted to be there, but could not arrange respite care to enable them to leave their sick child for even a few days. I am glad that the conference sessions will be made available to these people.
Ending the Isolation
‘Desperation’ was the word one of our keynote speakers used to describe the need of parents at the conference. Such desperation would be compounded for those parents stuck at home. Families have been alone too long.
As one dad said:
The conference was excellent. Two sessions were especially worthwhile, practical and pragmatic for me:
Hopefully the footage will be made available to all, as a source reference. A must for all carers!
Another highlight was the unique opportunity to approach all speakers during break times. They were all approachable and ready to answer questions and offer advice. I wholeheartedly support this conference becoming a regular event.
Conference Outcome – Fresh Focus
The Brisbane Conference was a milestone in ED care in Australia. As with others, involvement has had a positive outcome for me – in that I’m able to see more clearly where my focus and energy as an advocate must lie. As the sole eating disorder survivor representative on the conference main committee, and as co-chair of the program committee, my ‘voice of experience’ and input was necessarily coming from a different angle to that of other committee members comprising parents, clinicians, eating disorder support organization representatives and health administrators.
Advocacy work has made me aware that many adults suffer eating disorders in silence. Often these adults have missed an opportunity for treatment in their childhood, or have relapsed. Often they are sufficiently high-functioning to lead what appear comparatively normal lives – many are married, have children, high-powered careers. But as prisoner of the eating disorder, they live a part-life at best. The toll on their health and relationships is often tragic. Many of these adults have no carer. They may have a husband or partner who may be supportive, given half a chance, but the manipulative illness is such that they are often ignorant, oblivious, to the private torment. The sufferer feels desperate for help but doesn’t know how to get it.
The emphasis at the Brisbane conference was on parents as carers. Out of the more than 230 registrants, fewer than 15 were people with an eating disorder. I believe many adults with eating disorders would have gained much from the conference – from the opportunity to meet others with like experience, and from the opportunity to hear, especially, the keynote sessions by Professors Janet Treasure, Cindy Bulik and Stephen Touyz.
My hope is that adults who are in recovery will be more actively encouraged to attend our next conference. If we do this, I feel confident that attendance numbers will double.
Including the Patients
The Brisbane conference has clarified my main advocacy passion.
This is to help patients understand, be aware, empower them with the knowledge that they can change their lives, they can self-care – the science is here to help them retrain their brains and acquire coping tools, to over-ride entrenched illness thoughts and behaviours. Equally, my passion is to help parents and partners understand, be aware, that the science is here to help them to not only more effectively care for the patient but also to improve their own self-care.
Just because a person develops an eating disorder does not mean they cannot have a life. Oh yes they can! The reason I like to promote self-care is because the patient is the one who has to take responsibility, ultimately, for their own health throughout their life.
This is what I want people with an eating disorder to aim for. Gain the skills – because they are available today – and live. We must refuse to be defined by the illness.
One of our keynote speakers, Daniel Le Grange, reminded me post-conference that, beyond my long-term illness, today I am a carer. ‘You write books for carers, June’, he said. ‘You are helping carers all the time’. It was good to be reminded of this.
F.E.A.S.T. founder, Laura Collins, puts my fresh focus succinctly:
“One thing about what you are proposing and yearning to do is that you are taking a new stance: one that sees the illness as real and treatment as involving skills and connections rather than simplistic social explanations. Your orientation is skills-based, present-focused, and involving the newer science of the brain.
I would argue that your pioneering here is not so much about focusing on patients as in bringing the newer science and practice TO patients where up until now it has largely been only through clinicians and more recently, parents as caregivers….
I celebrate this innovation of yours, and your fresh focus….
We share this: we believe patients can fully recover at any age and that we as caregivers, friends, and professionals must not set any other standard.”
This common thread of hope and belief in full recovery is more important than anything, in my opinion.