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My Niche of Knowledge

by Judy Krasna, F.E.A.S.T. Executive Director

Over the next 2 weeks, I will be recording 2 workshop presentations for the International Conference on Eating Disorders (ICED), which is the Academy for Eating Disorders’ annual educational event. For the second year running, ICED will be virtual, which means using a video format to record presentations. It feels strange going through slides while talking to the camera that sits on top of my computer monitor instead of facing an audience of actual people, but it is just one more adjustment that COVID has brought into our lives.

One of the workshops is about the clash between eating disorders research and lived experience and the other is about using lived experience with suicidality to shape eating disorders treatment. I am fortunate and privileged to be presenting alongside top notch clinicians, researchers, and other experts by experience like myself. I am still nervous about presenting, despite years of experience, but I am grateful for the opportunity to participate in a workshop panel at a professional eating disorders conference. It is not something that I take for granted.

Most of the people who present at ICED are well credentialed. I am, shall we say, somewhat less well credentialed. I only have 2 letters after my name, BA (and in English literature no less!).

I didn’t gain my education or experience in a university classroom or a clinical setting, I gained it through being the mother of a child who suffered with an eating disorder for 13 years and took her own life as a result. It is a horrific way to learn about eating disorders and about suicidality; but as the saying goes, experience is the best teacher. I learned the hard way, the unpleasant way, the painful way. But the bottom line is that I learned. I became an expert, credentialed through the university of living hell. And now I share that expertise whenever I can, however I can, to try and improve the outcomes for people affected by eating disorders and their families.

I used to think that my lack of academic credentials made me less qualified to be a member of the AED, less qualified to present at conferences, less qualified to voice my opinions or my thoughts. The AED made me feel welcomed and well accepted, and offered me opportunities to share my knowledge, perspective, and insights with the professional eating disorders community. I came to realize that the voice of doubt came from inside my own head, and I found that adjusting my attitude quieted those voices.

Everyone has their niche of knowledge. Researchers, therapists, dietitians, psychiatrists, and physicians each hold a piece of the eating disorders puzzle. They come to conferences and present on their area of expertise, their niche of knowledge if you will, thereby adding additional dimension and enhancement to each other’s work.

Parents have a niche of knowledge as well. This knowledge is sometimes undervalued or underestimated. Granted, it’s not academic, it’s not clinical, and it’s not scientific. Our sample size is often 1. But the quantity of what we learn through parenting a person with an eating disorder is vast and extensive. The quality of what we learn through parenting a person with an eating disorder is remarkable. You can’t learn what we know in any other place than in the trenches with our children, which means that as parents and caregivers, we have a niche of knowledge that is unique. Sharing our insight with eating disorder professionals will add dimension to the work that they do and will ultimately make it better. This benefits everyone.

Parents are experts by experience. We have a different niche of knowledge than the professional community, and we gained our knowledge through a different channel, but that doesn’t decrease the value of our knowledge in any way. In fact, I would suggest that perhaps our knowledge has extra value, because it’s rarer and less accessible. There aren’t that many parents presenting at professional eating disorder conferences; I hope that in the future, this changes. I know that we can make that happen.

Over the years, F.E.A.S.T. has empowered me to believe that as parents, our knowledge is significant, our insight is valuable, and our voice is potent. I hope that F.E.A.S.T. empowers you to believe that too.

 

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14 Comments

  1. Linda

    Thank you so very much, Judy, for being a voice for so many of the parents enduring similar painful and enduring journey’s with our loved ones. Your voice as a parent is indeed very valuable and gives the clinicians more to think about while researching eating disorder treatments. I look forward to the day when ED treatment is greatly more effective for all and doesn’t leave so many individuals & families behind. You’ve got this!

  2. Diahann Dahman

    Judy,
    I don’t even know what to say, other than I see you, I hear you, and my heart goes out to you in the loss of your daughter…… Your knowledge is valuable and more meaningful to me than anything I would ever read out of a book. I would love to hear you speak!
    I am on year 6 battling ED with 2 children and what is offered is practically useless.
    I feel like I am paying money for services that have not helped my children at all. So much time and energy spent on futile attempts. I wonder about a cure. I wonder if something can ever be done to help these children that are suffering every single day. 26% of people with eating disorders attempt suicide. No one seems to care.
    There is no federal oversight or standard of care for eating disorder treatment. It’s a genetic brain based mental illness. It is complicated to treat. We as parents are often left advocating for the care of our children because nobody really has a working plan to help them get well. It makes me angry and leaves me feeling hopeless at times. HUGS

  3. Michelle

    Hi – how do we find out about the ICED presentations? Thank you for sharing your experience and helping parents navigate their way through eating disorders

  4. Sarah Rowland NZEDCS

    You absolutely deserve to have a place and to be part of any professional conference.
    Your experience, expertise and expertise is invaluable support to parents, carers and to professionals alike.
    The clash between Lived Experience and Clinicians is an experience I’ve faced many times. Although there are many, many examples of highly expert laypersons across a raft of sciences it feels very unwelcome in the field of ED and something which hopefully appears to be changing in some countries.
    It is wonderful to see you and others like yourself being genuinely valued in this way 💜

  5. Ellen

    Thank you Judy!
    Looking forward in a manner of speaking to the conference!
    Total agree with your “University of Hell”, if they offered degrees you would have a PhD!
    Also lived experience is extremely valuable to the community of parents and professionals (the latter may take some time to understand that).
    Thank you for all that you are and all that you have done and are doing!

  6. Deborah

    Thank you Judy for courage and fortitude. All voices matter. I am sorry you lost your daughter and thank you for working to share what you know to help save other kids too.

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