By Judy Krasna, Executive Director
As part of our upcoming “Give Thanks To F.E.A.S.T” fundraising appeal, I would like to write about why I am thankful for F.E.A.S.T.
Like most of you, when my daughter was first diagnosed with an eating disorder, I was clueless. It took a lot of research just to unlearn what I thought I knew about eating disorders and then learn a lot more to gain information, knowledge, and insight into what eating disorders really are and how to treat them.
I was raised to accept medical authority and not to challenge it. Quite honestly, I had no need to challenge it until the point when my daughter developed anorexia.
My pediatrician wasn’t listening to me. He thought that my daughter was depressed and pushed back against my assertation that I was seeing an eating disorder. He thought that it may be a good idea for me to take a step back.
When I finally convinced him to refer my daughter for specialized treatment, we were assigned to a dietitian who wouldn’t let me into the room during appointments, even though my daughter begged her to, and who told me during our first meeting that it’s my daughter’s responsibility to eat everything on her meal plan. I immediately challenged her on that, saying that my daughter had an eating disorder, and the expectation for her to be responsible for her own eating was preposterous. She insisted on giving my daughter autonomy, and I knew that we were headed off a cliff. I asked the head of the clinic for another dietitian immediately, and I was rejected, saying that it takes time for treatment to work. As my daughter steadily lost weight each week, I became more aggressive about getting a new dietitian, and eventually that happened, but by then it was too late. My daughter was headed for hospitalization, and I was beside myself with distress and frustration.
In the hospital, the treatment was more of the same. My husband and I were pushed out of the picture, blamed, and mistreated. We were desperate to help our daughter; we knew we could if someone educated and empowered us to do so, but her treatment was doing the opposite. Their clear message was, “We are the experts, and you are the parents who messed up your kid. Get away.”
I kept insisting that my daughter’s condition was worsening, but they denied this, saying that the numbers on the scale were going up, so she was improving. The thing is, she wasn’t. I felt her slipping away and they positioned her so far away from us that I couldn’t grab her and pull her back.
Every waking moment not spent at the hospital, caring for my other 3 kids, or working, was spent at the computer researching eating disorder treatment. I became educated enough to understand that my daughter was not getting evidence based treatment. My intuition was screaming to get my daughter out of the hospital, but I was terrified that bringing her home wasn’t feasible. After all, if we didn’t succeed in feeding her at home in the first place, what makes me think we can do it now, when her illness was so much more entrenched and the eating disorder voice was so much stronger?
My research paid off big time when I found F.E.A.S.T. I joined the Around the Dinner Table forum. I reached out to F.E.A.S.T for support, and I got it in spades from F.E.A.S.T. founder Laura Collins Lyster-Mensh. She didn’t tell me what to do. She empowered me by validating my concerns and she made me feel like as Gavriella’s mother, I was also an expert. I really needed that.
That empowerment was the push that I needed to advocate for my daughter. I needed someone to tell me that I wasn’t “just a parent”, that I was best placed to evaluate whether my daughter was improving or deteriorating, and that I didn’t cause her eating disorder but I could help her out of it. The ATDT forum reinforced those messages, and gave me the tools, skills, and knowledge that I needed to be able to care for my daughter. There is no way that I would have been able to sit across from her at the kitchen table for hours (and hours) on end, day after day, getting the feeding job done, without F.E.A.S.T. I also don’t think I could have stayed sane without the peer support and advice that I received from the forum.
F.E.A.S.T. helped me identify what to look for in a treatment team, so that when we moved to a different treatment center, we walked in with our eyes open and we knew what to ask and how to evaluate whether they could help our daughter. My daughter’s new treatment team was able to move her from the edge of the abyss to somewhere much safer, where she could go back to school and reclaim her life.
I don’t know how I would have gotten my daughter and our family through the roughest of times without F.E.A.S.T. For us, F.E.A.S.T. really was a port in the storm. We used every resource that F.E.A.S.T. had to offer. F.E.A.S.T. today has a lot more resources and services than when we started our journey, and there is so much more to be thankful for.
Today’s me is a lot better educated, a lot more empowered, and a lot stronger because of F.E.A.S.T. Today’s me doesn’t forget for a second what it felt like to be so desperate for help and to have nowhere to turn, and the sense of intense relief that I felt when I found F.E.A.S.T. It was like someone saying to me, “We got you” when I felt like I was free falling and giving me effective strategies to help my daughter.
And just like then, today’s F.E.A.S.T. is telling parents day in and day out, “We got you.” And we mean it.
Are you thankful to F.E.A.S.T? Please tell us what F.E.A.S.T. means to you! You can reach us at info@feast-ed.org. And please don’t forget to donate during our upcoming fundraising campaign between November 10-24. #givethanks2FEAST
We are now three years into anorexia with my 15 year old daughter. She has been to countless therapists, dieticians etc, one failed outpatient program and one inpatient program. I am solely responsible for her eating. I wish someone would explain to me why the dietician, who is without doubt the best she has seen, refuses to tell me her weight..just if she had gone up or down.. it is just beyond me.
Thank you for this Judy…each mother, each parent, who listens to and supports another is a God Send. Thank you for your commitment to parents’ work worldwide. You are a treasure.
Our book, in French, shares the stories of 26 families treated in France for eating disorders. Anorexie Paroles de Parents Parcours de soins. https://www.editions-empreinte.com/anorexie-paroles-de-parents-parcour