by JD Ouellette
In April my daughter celebrates 6 years since leaving treatment for the second time. There were strong “bumper pads” in place for the next couple of years (and the time was not challenge free), but she did everything she needed to do and more and it’s a daily joy to me to see her living her life as a healthy, strong, 24-year old woman pursuing her dream of working in law enforcement. I want what I have for every parent and sibling and I want what she has and has had for everyone with an eating disorder.
What did she have that I want for everyone else? Early diagnosis and excellent aggressive treatment in our community, and education for all of us on the importance of relapse prevention as a lifestyle. She got treatment that was evidence-based for her demographic and promoted a Health At Every Size approach to weight restoration, using growth charts versus generic percentiles as guides. We got treatment that started from the premise they were the experts on eating disorders and we were the experts on our child and that together we were the treatment team. We got treatment that understood that parents and other caregivers are most often a person’s most powerful asset in fighting an eating disorder.
What we lucked into was what I heard discussed time and again at the International Conference on Eating Disorders (ICED) in March 2019; that successful treatment comes from a place of education, compassion, kindness, dignity, humor, and genuine affection, and it must also come from a place of patience and persistence no matter what the model and whether the treatment is voluntary or compulsory. One of the most heartening phrases I heard at ICED 2019 was “Experts by Experience” – a wonderful shift in language that acknowledges that for us parents and other caregivers, as well as primary sufferers, our hard-earned expertise is valid and valued.
FEAST of Knowledge (FOK) originated from the understanding that attending conferences comes from a place of immense privilege – to have money and time to allocate to a days-long conference geared largely toward professionals is not universal, and yet priceless knowledge is gained and influence exerted in spaces such as ICED. How to make that knowledge accessible to a broader range of people was the question. What we came up with was to hold a one-day mini-conference the day after ICED concluded and make it as inexpensive and accessible as possible to caregivers – to have it be a day driven by what caregivers need; information and support and most of all HOPE.
This years FOK was an electric, transformative event held in a funky, intimate venue where parents drank in information and support as if they’d found an oasis in the desert – which actually isn’t an inappropriate metaphor for the experience. Because of scaffolding laid through years of relationship building via FEAST, this year’s FOK included brilliant, short presentations (education “bites”) by field leaders, many of whom graciously spent the time after presenting having conversations with individual parents. It also included breakout sessions focused on specific issues and dynamics caregivers may face. It was a time, space and event that captured the aforementioned treatment ideals of education, compassion, kindness, dignity, humor, and genuine affection, and stories of the payoff patience and persistence can have, and the truth that there is more to be done for every demographic.
What the space also held that excites me so much, as someone who has made this a focus of my personal advocacy, was a lot of MEN! Both ICED and FOK were filled with many great fathers whose boundless love for their children (those still with us and, sadly, some no longer here) has them hard in this fight at all levels and they are shaking things up powerfully and purposefully. I see many parallels between parents in the autism and eating disorders communities in terms of the need to change both medical and social understanding of the condition, the tremendous difference early intervention can make, and the payoffs when research and resources are funded at appropriate levels. As I am often heard saying, it wasn’t autism moms that changed things, it was autism parents.
I think there’s an additional dynamic at play that is exciting and hopeful; we now have parent advocates and impacted people who have (due to the hard work of past and long term parent advocates and visionary researchers and clinicians) seen success in beating an eating disorder in years rather than decades, and fully rather than partially, and we are coalescing, through FEAST, into a global force with power and purpose and we are poised to share our stories and truths openly and without stigma and in the service of facilitating a seismic shift in the world of eating disorders.
No matter what your skill set, we would love you to get involved and become part of the growing community of families and dedicated researchers, clinicians, and advocates who are ready to take on audacious goals like increasing research funding, creative funding solutions, research on a broader range of patients, early identification, more treatment resources and so much more. And if you are, or can be, in the vicinity of Sydney, Australia in 2020 or Monterrey, Mexico in 2021, we would love to have you at those FEASTs of Knowledge!