By Judy Krasna, F.E.A.S.T. Executive Director
If you take a poll of our community members and ask them why they are engaged in offering peer support to other families of people with eating disorders, most will answer that they want to guide other families around the pitfalls that they themselves encountered while caring for their own child, so that the journey of those other families is less fraught with hazards and setbacks. They want to shorten the path to recovery for others, thereby reducing the suffering that families experience when their loved one has an eating disorder. Simply put, there are many people in our community who want to use their own lived experience to help others.
Kindness is F.E.A.S.T.’s special sauce, and it is generously poured into everything we do. F.E.A.S.T. is kind because our community members are kind, and we are all committed to helping one another.
The peer support that F.E.A.S.T. offers is a lifeline for many families. Parents offer each other wisdom, advice, tips, information, and guidance. This insight is only accessible through those with lived experience who can tell you what worked for them (and didn’t work for them) when they were in the same situation.
As powerful as peer support is, I think it is important to recognize that while it is extremely beneficial for parents to hear what worked for someone else, the framework of one family’s lived experience is not necessarily going to fit the framework of another family. There is a subtle yet important difference between offering other parents the wisdom of your own lived experience vs. being directive or essentially commanding them to take the same path as you. Telling people what they must do based on what worked for you is not always helpful and can be very off putting to other parents. I know that we are all passionate about helping others, and about guiding parents around the pitfalls that we encountered. I deeply appreciate that this is what motivates all of us, including me, to give advice to others. However, it is important to frame this advice within the context of your own lived experience and to preface your response with “I can tell you what worked for us.”
There is no one path to follow for families of people affected by eating disorders; and when we imply that there is, I believe that we are at risk of causing more harm than good. The attitude that all parents must follow the same path, or stay away from certain paths, can leave some parents feeling even more alone, more afraid, and more frustrated, which is exactly the opposite of what we are trying to accomplish when we offer peer support to others.
The place where we sent our daughter for treatment when she first developed an eating disorder was a horrible fit for us. I have only negative things to say about our experience. There are times when parents from Israel contact me and ask me about that inpatient facility and I want to shout out, “No! Don’t send your child there!” However, the thing is, I know families who have had positive experiences there, whose children recovered. So, I am careful to offer my lived experience as my lived experience, without telling them what to do and what not to do. I am honest about the treatment that we received and about the negative impact that it had on our daughter and how it hurt our family. I give my opinion about how I feel that they set my daughter back instead of moving her forward. But I don’t tell other parents what to do with their own child. I give them the information that they need to make an informed decision. In my eyes, that is the best way for me to help them.
I believe that every family has their own path; and therefore, what is right for one family can be wrong for another. Sometimes families choose their path and other times the path is dictated to them by the realities of life. The way that I see it, if while advising other parents, we imply that if they don’t follow the path that we are directing them toward then there will be negative consequences, we are essentially stealing their hope in their child’s recovery. None of us would ever want to do that.
I have had the privilege of connecting with many parents in the F.E.A.S.T. community over the past few months, and I am amazed by how many of these parents blazed their own path. They did things that others would have considered misguided and unwise. And lo and behold, their children are on the road to recovery, because they made informed decisions and chose a path that was right for them.
Let’s keep using our lived experience to guide other parents. So many of you out there are perpetuating this cycle of kindness; you are giving back to others just as others once gave to you, and it is so meaningful for me to see that happening at F.E.A.S.T. every day. Let’s just remember to encourage all parents, regardless of the path that they choose, and to bolster their hope in their child’s recovery. While offering other parents information, knowledge, guidance, and support is vitally important, I believe that offering them hope is truly the ultimate kindness.
Many thanks for writing this. It helps me feel less like a failure when I see the path our family is on is quite different from others. The full parental control approach wasn’t working for us and being told by some to take this firm stance just backfired on us and ended up on our daughter being admitted to hospital. I felt inadequate that I wasn’t able to make this work when others appeared to be succeeding. This article has validated the path we find ourselves on, that it is unique to us and that there is hope!
Us, too!!! And reading your comment is even more validation- I felt so horrible by not “doing” what I was told. At the end of the day, we know our kids best, even with this ugly ED tagging along!!! Best to you and your family!
You’ve written exactly what my thoughts are. Honestly, it’s uncanny how much this reflects our experience. And this post is one of the two most valuable posts I’ve accessed on FEAST. The other was of a similar theme but more treatment focused, affirming that there isn’t just one way to recovery.
This article needs to be put on all parent support websites. FBT did not work for us, so to be told that it is the only way to recovery makes me feel like we failed our daughter. Like Kate Sinclair wrote, I felt inadequate and ashamed that I couldn’t make it work when other families had. My daughter is still working towards recovery 8.5 years later. We have tried many paths and have finally found the one that works for her. Thank you so much for writing this.
I am struggling so hard with this. We are doing FBT and it’s going well but my daughter is just so sad. Her body image is terrible. I’m so worried that although the weight is on and she’s stable, everything else is getting worse. Everyone is telling me FBT is the only way and I just don’t know for my daughter. Now that the weight is on although she’s not WR+ can we focus more on other things. It’s so hard !!
We have done everything backwards during the pandemic. We rejected the residential facility and PHP after the third successful hospitalization and are sort of doing FBT at home. The body image is not good, but the food is going in. There are other behaviors I hope will resolve with therapy, time, and weight gain. I feel the sneers of the treatment team from the hospital through the galaxy……Good luck to all. <3
Judy, once again you have offered a smart, concise, and kind post that will help those with lived experience in the parent community to move forward in their volunteer efforts to empower ALL families to take in information and make their own informed decisions for their loved one in their battle against an eating disorder.
Yes, yes, yes. There are multiple paths that lead to eating disorders; how can there be only one path out? I sympathize with people who can only see one path; it’s a symptom of fear. When ego gets involved, it can be hard to see that other people doing things differently doesn’t mean they’re saying the way you did it was wrong, and raging against different forms of treatment and treaters doesn’t help others who benefit from those modalities, it only masks fear your child will relapse and sadness there are no guarantees. There can be multiple “right” answers even for the same family. THANK YOU for turning this organization from a “one-size-fits-all and if it doesn’t, try harder” approach into one of genuine support for families. I hope to see this continue so that I’ll be able to recommend FEAST to parents and caregivers in a way that I haven’t been able to do in the past. THANK YOU.
I feel so connected to all of the comments here and to all of you who are struggling. You will find the path that works for you. If it doesn’t exist, you will create it. I have full confidence in all of you, and I hold hope in your children’s recovery.
You write so beautifully Judy & from the heart. Thankyou for all you do. This post is so validating & reassuring for so many. As parents, we know our own child best. Eating disorders are not a ‘one size fits all’ treatment and it needs to be tailored to the individual’s traits, temperament & family situation. Providing hope & kindness is the greatest support & sharing lived experience knowledge as an example rather than ‘the only way’ allows families to work out which path is best for them. Thankyou Thankyou Thankyou ❤️
Thank you so very much. This is everything.
I believe that everyone has their own path to recovery. No one should feel shamed by not following a particular path. Find people in your life that will not judge you.
Wow, Judy! So very well expressed, thank you.
Alternate experiences to the traditional “parents take full control” are so important to hear about. I wish there was a separate section for these on your site. I rarely read this site anymore, because it makes me feel guilty that we are not following the traditional approach and many advocates of the traditional approach may not understand that there are alternatives when commenting.
We did take full cobtrol and it worked BUT we did many conteoversial things like not having FBT in situ (before the pandemic when it wasn’t “normal” to do), we didn’t weight often, my d kept going to school and to her dance class (very very low key), and didn’t start to give independance back until months after WR, very very slowly. During the start of the pandemic we kind of took control back after d threw her shake once. She only saw the FBT t once but did CBT 2 years after diagnose. She’s doing great despite a very very long lockdown and no school in person for the whole academic year.
Thank you all for sharing. I too wish there were a section of the website dedicated to those parents who FBT didn’t work for. My daughter is still struggling and FBT has not worked for us. We are still trying to find the right path. But reading this gives me hope.
Thank you Judy for telling it like it is. Not only are their different paths or journeys between families, there are different paths within one family. It is very reassuring to know this. The other day I was driving a friend to her doctor’s appointment. She told me to go one way – the way she always drives – and I went a different way. Both ways got us to where we needed to go.
Thank you Judy for telling it like it is. Not only are there different paths or journeys between families, there are different paths within one family. It is very reassuring to know this. FBT did not work for us. DBT was better – I completed the 16-week DBT course myself and it made a huge difference for our family.
The other day I was driving a friend to her doctor’s appointment. She told me to go one way – the way she always drives – and I went a different way. Both ways got us to where we needed to go.