By Judy Krasna, F.E.A.S.T. Executive Director
I still edit the blogs section of the F.E.A.S.T. website, even after taking on the role of Executive Director, because it’s my passion and I don’t want to give it up. I thrive on seeing the F.E.A.S.T. website populated by our own content, rich with lived experience, wisdom, (super) human strength and resilience, recovery messages, and current science.
There are times when I publish a blog post knowing that it may be controversial. I believe that when people respect each other, controversy can be productive. I welcome robust discussion around issues that spark controversy, because I think that we gain valuable perspective and a greater depth of knowledge by listening to each other’s points of view, especially when they are influenced by lived experience.
I knew when I published a post that included a piece about motivation playing a role in recovery, some parents would find it problematic while others would relate to it. That makes perfect sense to me.
We are all in different places in our journey. A parent whose child has been affected by an eating disorder for 14 years is not going to have the same perspective on treatment and recovery as a person whose child has been affected by an eating disorder for 14 months. It’s not a matter of right or wrong; there is no black and white here. Everyone has their own truth, their own path, and their own well-earned right to their own thoughts and ideas about eating disorders. F.E.A.S.T. is all about the free exchange of our different lived experiences; through sharing this lived experience, we help, guide, inform, and support one another. However, it’s inevitable that our lived experiences will clash—and that’s okay!
I have found that sometimes, my own lived experience clashes with itself. Here is a perfect example—
When my daughter first developed an eating disorder at age 14, she was totally unmotivated to recover. My daughter was quite happy with her eating disorder, and very much wanted to keep it. This lack of motivation got in the way of the efficacy of her treatment team. They seemed to think that my daughter needed to be a willing party to treatment; and when the treatment failed, they blamed it on my daughter’s lack of motivation to recover. They said that my daughter needed to be on board with treatment and working toward her own recovery; otherwise, it wouldn’t work.
I think their attitude and misguided approach was a far greater problem than my daughter’s lack of motivation. My daughter was 14 years old and in the throes of a vicious eating disorder. She didn’t have the capacity to be motivated, and it’s tragic that her treatment team understood so little about eating disorders that they had no insight as to why my daughter lacked motivation. They were trying to use psychotherapy on an adolescent with a starved brain, and she wasn’t having any of it. We were told that until our daughter developed motivation to recover, there wasn’t anything they could really do to help her. This is the last thing that any parent wants to hear; the message that we received was that since motivation wasn’t on the horizon, neither was recovery. What were we supposed to do?? You can’t force motivation on another person.
In my opinion, one of the greatest assets of FBT is that motivation to recover isn’t a requirement, and neither is the willingness to participate in psychotherapy. In fact, my understanding is it’s not even expected. Unfortunately, we didn’t know about FBT during the initial stages of my daughter’s eating disorder. We were convinced that there was no hope of recovery for our daughter, and our daughter’s eating disorder was empowered by the victory of “failing” therapy. It was frustrating, terrifying, and disheartening.
Based on my experience, I have strong feelings about how damaging it can be when motivation to recover is designated as a requirement in treatment. And if you ask me whether someone early in their eating disorder journey needs motivation to recover, my personal answer would be an emphatic “no”. Plenty of families in our community have proven that motivation is not a requirement. These families have focused exclusively on feeding and weight restoration, and their children have made a full recovery. Motivation wasn’t part of the equation.
However, I do believe that there may be a distinction between someone in the early stages of an eating disorder and someone with an enduring eating disorder. When you are talking about someone who has had an eating disorder for over a decade, as my daughter did (and as the author of the post did), I think that motivation can, and does, play a role in recovery for some people.
When my daughter was in her early 20’s, and her brain was more mature, she developed motivation—she claimed that she didn’t want to recover, but she wanted to get the eating disorder out of her head so that she could reclaim her life and move forward. She used that motivation to stay alive and to fight the strong pull of suicidality that accompanied her eating disorder. In the end my daughter did not recover, but those extra years of life that she had were significant and meaningful. She wouldn’t have survived as long as she did without motivation.
Part of treatment for severe and enduring eating disorders is actually quite the opposite of “life stops until you eat” because it’s critical for someone with an enduring eating disorder to remain connected to the people and things that give them motivation to be healthy. Life needs to keep going as much as possible. I’m not saying that people with enduring eating disorders shouldn’t be receiving full nutrition, I am saying that the attitudes associated with their treatment are different.
So I see motivation from two totally different perspectives. I was the mother who was told that her daughter couldn’t be successfully treated without motivation to recover and I was the mother who saw what a big factor motivation was in my daughter’s struggle to move forward and leave her eating disorder behind. I have come to understand that where you are in your child’s journey greatly influences the lens through which you view so many things, and that there is a legitimacy to all perspectives informed by lived experience, even those that I don’t agree with personally.
At F.E.A.S.T., we need to be here for all parents. I think one of the best ways that we can do that is to recognize that different perspectives come with different opinions and different viewpoints. At F.E.A.S.T., we value and respect all of them.
Thanks Judy. I appreciate you and your deep sharing of lived experience. Thanks too for taking words from parents like me and shaping them into blog posts. You are making a difference every day.
This is written so so well and is such valuable perspective
So well described, and so wisely grounded. Thank you for being the reasonable and nuanced voice we need in our community!
This is such a valuable piece of writing Judy. Informative and validating. Thank you.
This makes so much sense to me and is actually quite clarifying during a difficult time. Thank you!
Thank you Judy,
very well said. seems like you talking about me. i am struggling so much. mine is 15 yrs old. at this point i am feeling hopeless. it is so hard to take the control away.
Yes! Timing and access are everything and the longer an ED is in play, the more treatment will have to look different. My primary work is with families of teens and young adults and that is a very different ball game than older, financially independent adults. What you said about the role of motivation with your own daughter is compelling and insightful.
I also think there is a lot to be said for using life as motivation as part of life stops until you eat—it can be an hour by hour adjustment.
Hmmmm, I’m having a hard time with this. You explained it well above, Judy, and I hope everyone who reads Ricarda’s post makes their way here. It was brave of her to share her story, and I value hearing different perspectives, but I think a parent newly facing the AN beast would not be empowered by coming across that post. As you pointed out, her perspective makes sense from her (15 yr) severe and enduring experience, but it could be damaging to a caregiver starting out and waiting for buy-in from their child who is suffering. I don’t believe Ricarda’s post aligns with FEAST’s beliefs regarding anosognosia, causes of eating disorders, etc. and requires more of an edit. Perhaps a few lines from your post here added to the Editor’s Notes regarding SE-ED versus newly diagnosed.
Thank you for this comment, I can add to the editor’s notes as you suggested.
I am so grateful for this post. My daughter has bulimia like I did as a young person. It is so difficult to support her. Your words help.