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Everyone Has A Seat At Our Table

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

I used to be a very black and white thinker. I don’t know whether it’s a function of age, or life experience, or this job, but I see a lot of shades of grey these days. I understand that while I may have an answer, it isn’t necessarily the answer.

I see a lot of black and white thinking on the F.E.A.S.T. Around the Dinner Table Facebook forum, and it concerns me. If someone only sees the black, they effectively invalidate everyone who only sees the white, or who can see the grey. While their perspective will undoubtedly be helpful to some, it will leave others totally on the outside, feeling unseen and unvalued.

I also find some comments on that forum to be too directive. The idea of peer support is to use one’s experience to guide others; tell others what you did, don’t tell them what to do. While we know what worked for our own family, we don’t know what will and won’t work for someone else’s.

The only (very occasional) criticism that I have ever heard from providers about F.E.A.S.T. is related to how parents of their patients who used our Facebook forum have felt marginalized for expressing “unpopular” opinions or drowned out by louder, oppositional voices. These parents have left the group because they didn’t find it to be a safe space. As a result, they are far less informed and supported, rendering them less capable of helping their loved one. And that, my friends, is a tragedy.

By nature, we are a kind and passionate community. We want to share our experiences with others so they can be guided by what we did right—and by what we did wrong. Everyone’s intention is to help other parents succeed, to improve their journey, to make them feel less alone, and to try and positively sway the outcomes of other families. Our forums are a literal lifeline to thousands of families, and the embodiment of the generous peer support that is at the heart of F.E.A.S.T.  But sometimes we fall short, and I think it’s important to acknowledge that so we can do better.

Many fortunate families in our community have found their path to recovery. And while there may be some commonalities between some of those paths, there is no one path. This journey would be so much easier if there was. At F.E.A.S.T., we strongly believe in evidence-based treatment, but let’s not be blind to the fact that even the most successful treatments are woefully inadequate in producing acceptable recovery rates.

For some families, full weight restoration is the key to their child’s recovery from anorexia. For others, sadly, it is not. There are comorbidities in play, or for whatever reason it’s not only about the weight. For my daughter, full weight restoration came with a shift from restrictive anorexia to binge/purge anorexia and brought with it the very unwelcome stowaway of suicidal ideation. I’m concerned that definitively and decisively linking weight restoration with recovery is not serving the needs of our community equitably. While it absolutely offers some parents very important guidance, it frustrates others who do not find this to be true, and it makes them feel like they are doing something wrong when they are in fact doing everything right.

It’s my job to see and serve the entire F.E.A.S.T. community, and to make sure that everyone within it feels valued. It’s also my job to make sure that parents and caregivers who use our services get good information. These two things are not always entirely compatible. Not all parents offering comments on our forums are equally wise or equally experienced or equally knowledgeable. But our forums should be a place where all parents feel equally comfortable posting so that they can get the information and support they need. The tone across the board should be kind and compassionate. There are polite and respectful ways to disagree with the opinions of others which don’t make them feel small or invalidated. And please, let’s keep the death card off limits. As someone who lost a child, I am horrified by the scare tactics used by some on the forums. They are not kind.

I’m also concerned that there may be more worth attached to the insight of those whose children have recovered than to those whose children have not. I want to categorically state that this is completely antithetical to F.E.A.S.T. values. I would offer myself as a case in point. I would never say that my insight has more value than anyone else’s because I don’t believe that. But I think to say that my insight has less value because my daughter didn’t recover is misguided. The exact same actions taken by different families can lead to divergent outcomes. That is part of what I believe makes eating disorder recovery so elusive.

The Around the Dinner Table forums are the crown jewels of F.E.A.S.T. They harness the power of peer support, lived experience, and community, and serve as a beacon of hope and a guiding light to thousands of parents around the world. I am genuinely grateful to the many parents who regularly contribute their wisdom to help others and to our dedicated moderators who keep the forums running day in and day out. F.E.A.S.T. is so lucky to have all of you.

Everyone has a seat at our table. Everyone has a voice. Everyone is valued. If you need to hear that again, let me know. I’ll say it as often as you need to hear it.

3 Comments

  1. Lisa Epstein

    First let me say Judy that I am with 100% that we must strive to be a place where caregivers come and be heard and feel safe to to express there concerns, fears and experiences. Feast has always been a place to learn about evidence based and experiential knowledge along with compassion and hope.
    Unfortunately the treatment professional field of knowledge is not standardized and can sadly too often direct families in long term bad ways. This in and of itself is frightening.
    While there are several paths to surviving and recovering from an life threading eating disorder there is no path that doesn’t prioritize full weight restoration which for growing children is a moving target and without it few are able to apply any therapeutic interventions. That said i want to make one more point. I think research is still not caught up most caregivers whose children have survived and flourish have learned that weight restoration plus has seemed to give the brain a chance to catch up to the body. Now what has all struck me is that in this process almost without exception during the weight restoration process SEVERE anxiety and even self harm and suicidal ideation is common. This is frightening to any caregiver. Too often to protect themselves professionals kick these kids out for fear of law suits. I’ve seen it over and over again. This breaks my heat and while it is very important to make sure your child is safe and this is as important as weight restoration psychiatric admissions do not address the medical concerns and only serve the safety by having something watching your loved one 24/7. It can only be short term or the brain just gets sicker. Yes they can change or add a chemotherapeutic intervention ( meaning meds to treat the anxiety ) but rarely can that even be effective with a starving brain. Now I say a lot of this from experience AND attending many professional conference.
    The question is how to we share these ideas without making the scared caregiver feel overwhelmed and judged.
    Well I think we start with compassion. Most of us have been, scared and even desperate to understand and help our children. I know you are a bright, caring educated parent who lost her child despite everything you could do and you are here to be a strong compassionate educated support to others because you know the feeling that they are experiencing and you want to be the safe place to land and learn. I think there has always been some tension at feast about FBT and empowering parents to follow this highest rated form of care. I would say there are variations of this for young and older adults that seem to be most effective and there have been providers who criticize feast for only supporting this practices. That is just untrue and it breaks my heart to hear pros say this. I am an early feast follower and now just an occasional poster. I know that feast is there to support all caregivers regardless of what their treatment plan is. And you are absolutely right that no one individual treatment plan is the same. The value of meeting the sufferer and the caregiver where they are with a plan that meets their needs is critical to recovery.
    Thank you for reminding us all about compassion for those in the trenches

  2. Eva Musby

    Thank you Judy, and the whole team, for striving to make the forums supportive and safe.
    I love reading the wide variety of experiences in the whole black-white-grey zone. It’s tremendously useful and educational.

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