by Judy Krasna, F.E.A.S.T. Board Member and Volunteer
As the mother of a daughter who had an enduring eating disorder for 13 years, the scope of my experiential knowledge about eating disorders is broad. Simply put, I know a lot. I didn’t learn it in a classroom or through any other type of formal education, but I believe that I am an expert, nonetheless. My eating disorder “credentials” are from the University of Lived Experience. I graduated with honors. I think that some of you may have been in my class.
For years, I have presented at eating disorder conferences and sat in on critical discussions alongside professionals. I’ll be honest, it can be intimidating. I don’t have an alphabet soup of credentials after my name. I don’t have professional training. In Israel, I have the disadvantage of not speaking Hebrew as a native. I sound even more like an outsider with my American accent.
I have come to the conclusion that yes, I may be an outsider in some respects; however, my experiential knowledge offers enlightenment, enrichment, and depth to the field of eating disorders. There are things that you can only learn from living in a house 24/7 with someone affected by an eating disorder. There are some insights that we gain as parents which cannot be acquired in any other way. Contributing our experiential wisdom and sharing those insights with clinicians and researchers adds an additional dimension to what they know about eating disorders that can lead to more productive research and treatment. Our input is especially important when it comes to guidelines and policies related to patient care; our experiential knowledge is so valuable in those areas. The bottom line is that we bring a tremendous amount to the table.
The problem is that we are not always invited to the table. Many times, we are not invited to use our voices and to share our perspective. I recently saw an announcement for a presentation related to how COVID19 affects individuals with eating disorders and caregivers, but when I looked to see who was on the panel, there were no affected individuals or parents, there were only clinicians. I could not help but lament what a missed opportunity this was. Inviting someone with lived experienced could have enhanced this presentation and made it so much more relatable. That is a big piece of what we do as parent advocates, we make eating disorders, those who are affected by them, and those who care for those affected by them, more personal and relatable. There is no substitute for our voice, for our wisdom, or for our perspective.
I see it like this: Have you ever watched a movie that was dubbed to a different language? The words can be the same and you can understand the gist of things just fine, but when you replace one voice with another, you miss out on a lot of things, some more subtle than others.
In my mind, this is what happens when clinicians and researchers speak for us instead of inviting us to speak for ourselves. Even with the best of intentions, they are diluting our messages and lowering the volume of our voice. This is why I insist on using my own voice, because no one can muster the same passion about improving treatment, informing research, reducing suffering, and reforming policy as the parent of someone with an eating disorder. Experience has made us wise experts. And without experiential wisdom, I fear that professional wisdom falls flat. Treatment won’t hit the targets the way it should. Research won’t lead to better outcomes.
As parents, we need to claim our role as experiential experts. It’s daunting to be a non-professional among professionals. I used to be embarrassed about my lack of credentials. I have a Bachelor of Arts in English Literature and Communications, which doesn’t exactly qualify me to present at eating disorder conferences and to participate in professional panels designed to improve the treatment system in Israel. But in those moments of self-doubt, I remind myself that my hard-earned credentials from the University of Lived Experience are worthy of merit and respect, and that I have something valuable and significant to contribute to the field of eating disorders. We all do.