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.
