We are contacted here at F.E.A.S.T. every day by a desperate parent searching for care for a loved one suffering from an eating disorder. Your requests are urgent, understandable, and simple: “please tell me who to work with.”
My answer to you is pretty infuriating: “I’m sorry, we don’t do that.”
I explain our policy of remaining independent from the referral network, that we are spread too thin around the world to be aware of the quality of individual services, that we don’t want to disempower parents by “telling them what to do,” and that finding the right fit for the situation is highly individual.
Even when you get it, you are understandably disappointed. After all, you need help. You don’t know anything about any of those issues. You just need help NOW, for YOUR precious person.
This week one of you told me on no uncertain terms how that policy made you feel:
“I hear your position and the organization’s position. I understand the intent, but disagree with the effectiveness of such a philosophy…we’ve spent countless hours and dollars trying to find effective treatment and competent providers…to no avail.”
I want to share part of my response, not because it comforts anyone, but because I realized that parent deserved to know the bigger truth:
This is the scariest and most honest thing I can say: you probably are the effective treatment and competent provider for the most part. I’m not discouraging you from seeking clinical support or getting help finding them, but I think I can reasonably say that very few of us find that ideal fit, affordably, or over time. My husband and I went to nine different clinics before we realized what we were looking for (someone to tell us what to do and how, and to help us do it) was simply not there. Eating disorder treatment is uncommon, unregulated, and not available in a geographically or economically reasoned way. Most families stumble onto something that meets some of their needs for some of the time, then another (as we patch together solutions for that phase of the journey).
Some families settle for really poor treatment, or give up and don’t get treatment at all except in medical emergencies. The latter is what I’m hoping to help you avoid.
My husband and I ended up pursuing a self-driven speed learning about Eds, buying manuals and printing out materials that we brought to non-specialists and we asked for them to learn it with us and do what we asked. That worked in some cases well, and later not as well. But we were the leaders of the team, the accountability, I did the on the ground treatment at home, we consulted with people long distance and quarterly, and we struggled. Our daughter did recover, but painfully. It nearly broke me medically.
All this is why we founded F.E.A.S.T, actually. (We) knew someone needed to empower families to act, and we needed to change the treatment environment to move toward family-inclusive, evidence-based treatment. But we are a scattered few thousand parents around the world and we can’t promise to give something we don’t have: which is a first-hand knowledge of all providers and a way to help parents know the difference.
And: I can’t send you to a better resource because (US) referral lines are heavily influenced by marketing and advertising money, not evidence or effectiveness.
Most care out there is very poor, very expensive, and not effective. We’re trying to give parents like you a fighting chance, but it is like we are in the early days of germ theory, where we could explain about antiseptics and hand washing but you could not expect your (local) doctor to believe in it. We can only equip parents with knowledge and encourage you to fight like hell for your kids. To not trust everything you encounter, but to know that there ARE better methods and there are really great clinicians.
And someday, when your daughter is well and you are ready to use your difficult experience to help others avoid it, we are here to have you join our fight.
We’re just parents like you, all over the world, fighting for you, but it isn’t enough and I understand your frustration. I am fighting for a world in which there is someone who can do that, or it isn’t necessary, because providers themselves will be of high quality and widely available.
Sorry to rant quite so loudly here, but you deserved an honest response.