by Judy Krasna, F.E.A.S.T. Board Secretary
Seven years ago, I was approached to serve on a committee of the Academy for Eating Disorders (AED). At the time, I didn’t even know what the AED was. I was the mother of a daughter with an eating disorder and I was advocating for better eating disorders treatment and offering peer support to other parents in Israel, where I live. The idea of volunteering in a professional eating disorders organization alongside clinicians and researchers was extremely intimidating to me.
After all, I was just a mom! But I saw it as an incredible opportunity, and I took it.
A year later, the AED announced the formation of the Patient/Carer Committee. They were recruiting people with lived experience either as individuals affected by an eating disorder or as caregivers. I jumped at the chance to join this committee (and shortly thereafter to co-chair it). The mission of the Patient/Carer Committee is to integrate the lived experience of patients and caregivers into the programs and services of the AED.
More recently, the Patient/Carer Committee requested a name change. We wanted to be known as the Experts by Experience Committee, because that is who we are. We are experts on eating disorders through our own lived experience. The name “Experts by Experience” is empowering, and it gives us credibility. It makes us feel less isolated from, and more a part of, the AED’s professional community.
I am a mom without academic credentials, and I am also an expert on eating disorders.
I personally believe that if the eating disorders research and clinical communities would sincerely internalize the message that parents are experts in our own right, then they will include us in their work, which will lead to more impactful research, improved treatment, and the reduction of suffering for eating disorder patients and their families.
I am both pleased and proud that the AED has given Experts by Experience a voice within the professional eating disorders community. That being said, the way that I see it, this is truly to the organization’s benefit. The bottom line is that Experts by Experience possess knowledge, wisdom, information, insight, and perspective that can only be gained through lived experience. We have all of this, and more, to contribute to the professional community. It’s on us to figure out how to do this.
One such initiative is the latest project of the Experts by Experience Committee, named “10 Actions”. We created 3 one-page practical guides; one directed at affected individuals, one directed at caregivers, and one directed at clinicians, with content along the lines of “what Experts by Experience want you to know.” These guides are based not only on the lived experience of our committee members but on the lived experience of the (48) people who responded to our REDCap survey.
Quite a few members of F.E.A.S.T.’s ranks were instrumental in the creation of the “10 Actions” guides. Kym Piekunka, our Special Projects Coordinator, led the team who developed content for the carer guide. Board of Directors and Executive Committee members Nicki Wilson and I were both part of Kym’s team. Other Experts by Experience Committee contributors include Advisory Panel members Therese Waterhous, Chevese Turner, Shannon Calvert, and Belinda Caldwell.
I hope that these guides are well received, that they are useful to those for whom they are intended, and that these actions are implemented. I love the fact that they include the perspective of different stakeholders, from multiple countries, and that so many of our experiences are similar. This reinforces the essence of the global nature of both F.E.A.S.T. and the AED and gives me hope that breakthroughs in research and treatment in one country will have a worldwide impact.