By Judy Krasna, F.E.A.S.T. Executive Director
One of the things that we emphasize often at F.E.A.S.T. is that there is no one path to a family’s eating disorder journey. The reason why this is so important is that we know that parents are traveling on multiple paths. If we put forth that there is only one path, then we are excluding and invalidating the parents who are choosing a different path for their family’s journey than the one which we designate as being the “right” one.
F.E.A.S.T. is about making space for all parents, at all stages of their journey. It’s about supporting parents and caregivers regardless of the path that they choose.
One of the pillars of our peer support philosophy is that we share wisdom and advice from a place of lived experience, in the context of what worked and didn’t work for us personally. And in doing that, we recognize that what did not work for us may work for someone else, and vice versa, because each family is different, and there is no one-size-fits-all approach that will work for everyone.
We try not to be directive. We try not to tell people what to do or what not to do. We share evidence-based information, which is backed up many times by anecdotal experience. We give caregivers the education and the resources which enable them to make their own decisions and find their own path. The idea isn’t to replicate someone else’s path, it’s to use the lived experience of others to forge one’s own path, which takes into account the considerations and factors which are specific to each family.
Two weeks ago, I wrote a post about “terminal anorexia nervosa.” Some of the comments on the post were by parents supporting an adult child who is at a terminal stage of their illness or by parents who lost a child under similar circumstances to what is referred to as “terminal anorexia nervosa” in an article authored by Dr. Jennifer Gaudiani et al. I received personal messages from other parents in this tragic situation as well. And through this input, I realize that I may have unintentionally made them feel invalidated, which is why I feel compelled to write this follow-up piece.
We know that eating disorders are full of paradoxes and contradictions. Eating disorders are serious and they are treatable. There is always hope for recovery for people with eating disorders and the mortality rate of eating disorders is one of the highest of all mental illnesses. “Terminal anorexia nervosa” is a horrible designation and there are people suffering with the illness who may fit the criteria. Not a lot of people, only a tiny percentage of people, but their families need to find their own paths in the midst of unthinkable grief and difficult emotions. It’s our role to support those parents who are facing or who have faced the end of their child’s life. No matter how hard parents fight, despite the fact that they did all of the right things, sometimes the eating disorder wins. And while that is devastating–and downright terrifying– to hear as the parent of a person with an eating disorder, it’s also important, because it reminds us what’s at stake and motivates us to keep doing what we do to support our loved one’s recovery, day after day, despite intense exhaustion, frustration, and severe emotional strain.
I had a conversation with Dr. Jennifer Gaudiani last week about her position on “terminal anorexia nervosa.” It gave me the opportunity to connect with her one-on-one, to hear her experiences, to understand her position, and to widen the lens through which I see this issue. It also gave me the opportunity to share my perspective with her, especially on why I feel that her work in this area is such a slippery slope. I know that she heard me, as I heard her, and I appreciate that she took the time to speak with me and that she was so open; I think we need to have more of these conversations and initiate more dialogue, especially around highly charged and tough topics.
My position was, and still is, that setting criteria for “terminal anorexia nervosa” and allowing for medical aid in dying can do harm in our community. I still question the decision-making capacity of a person who is severely compromised by an eating disorder. And alongside that, I fully acknowledge that this issue is very nuanced and far from simple; it’s not black and white, and it needs to be addressed in a measured and thoughtful way, taking into account multiple considerations of different natures.
On a personal level, I am grateful that there is a Dr. Gaudiani out there supporting those whose illness is so severe that they may be considered medically terminal and that there is a Dr. Guarda out there disagreeing with her about “terminal anorexia nervosa.” As a parent body, we need them both. They are both champions for patients and their families.
There is no one path, and there is no one way to love your child. At F.E.A.S.T, we give parents the resources and the tools to make the best decisions possible regarding their child’s care. In most cases, as is our ultimate goal, this leads to recovery, and to positive outcomes. There is so much hope for full recovery and for healing, and not everyone is privileged to experience recovery. It’s another one of those paradoxes where one piece doesn’t negate the other.
Let’s keep talking about the hard things even though it’s scary and uncomfortable. It’s the only way to make space for everyone, so that we can accompany all parents on their journeys and make sure that no one travels their path alone.
Once again, Judy, you encapsulate our hardest conversations with grace and thoughtfulness. We are, after all, about supporting treatment in eating disorders. We will be put into the hard conversations, and through open conversation will be able, I believe, to help those clinicians struggling with this very fine line to do the best by their patients and families. It is, as you say, nuanced and a slippery slope if all angles are not looked at.
Thank you, Judy for addressing such difficult conversations in such an open and caring way. AND is such an important word in this context!
Thanks for this follow up article Judy – such quality in perspective and understanding.
Thoughtful and nuanced, as always. Hopefully one day the amazing research being done by the dedicated practitioners in the field will lead to additional paths that provide some clarity for families to choose based on clear disease factors, personality traits, biological or metabolic markers, behavioral issues, etc. Until then, the shared lived experiences and support from the FEAST community – in all its nuance and struggle – is a lifesaver to many.
Thank you Judy for your thoughtful and heartfelt response and for opening up this conversation.
Beautifully said, Judy 🙂
Thank you Judy.
My daughter loved and respected Dr G. She is a wonderful and insightful advocate in the ongoing treatment of ED disorders.
It is so hard to fathom the depth of desperation our loved ones experience. She has seen it all and tries to put her arms around her patients.
I can’t say that I would personally advocate her position but my heart can see her heart.