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.
Laura
Thank you Laura. Very new to this subject, I was looking for exactly what that parent wanted – advice on which therapist/treatments come recommended in my area (Sydney Australia). But you have strengthened my gut feeling, which is that it is us parents who will need to be in charge. I don’t feel bad now for ditching the first psychologist last week who spoke to my teenage daughter like she was a 2 year old with limited comprehension. The search continues…
Don’t give up, Deborah! Sending you courage and stamina as you work out who and how and with whom. There are really good clinicians but it is still up to us to do our part, and that often involves finding the right fit.
“Most care out there is very poor, very expensive, and not effective.” So true. And often the way they judge their own effectiveness (i.e. judge when they can discharge your child or lower their level of treatment) is by weight only, so your child may be deemed “well” even though s/he may be exhibiting all the unhealthy behaviors that got him/her there in the first place (plus the ones learned in treatment.) What Laura’s advice might look like is finding a progressive minded family practitioner willing to develop a relationship with your child – and you – and read and learn with you. The next part might be to unlearn everything you ever learned about weight, nutrition, body size and health. Society’s norms and talking points will reinforce ED every time. (This is why it’s so hard to find a therapist. They are easily manipulated by ED.) One thing that helped in this family was, along with FBT-oriented reading, we added some reading about the fat awareness / weight bias / health at every size movement. Our own implicit biases about weight and health, and the language we use to talk about them, became more clear.
So agree with you, Amy. Recognizing and facing my own weight bias and other myth-ridden ideas about health made me a better advocate for our children, and a wiser and happier person altogether.
I hear what Lara’s saying and I def. see that is true re care effectiveness and affordability , eso Think this is the best way with minors as you have more say in the treatment, / re feeding I am concerned about young adults who do not live at home. Wondering if some support at least a intensive outpt program or day program might be of benefit for this population who won’t or can’t rely on family for the extra boost of support ?
After over a decade of watching families of young adults struggle, I wonder why we look at this any differently than we would any other illness. A young adult, or any adult, who has a serious illness often moves in with family to get support. Why wouldn’t we expect this with eating disorders? We’re talking about deadly brain disorders that alter judgment and defy normal treatment efforts. Clinicians struggle to keep patients in care, and lack the ability to keep the person safe or even understanding the necessity of treatment compliance. Why wouldn’t family step forward? And if there is no family to do this, doesn’t the patient deserve support at home from someone?
After one terrible year away, my young adult has done much better in the past few years living at home. I think eventually she will be able to live independently again, but she isn’t in a hurry. She is very independent, but knows the support is helpful for her.
Hi Laura. Treatment at home is what we want to do, but it’s not possible for every family. Treatment at home for anyone over age 18 is dependent on the sufferer being willing to comply. Our son won’t agree to live at our house. He can live with his dad, and dad is uneducated on this illness, and unwilling to learn. We have no leverage to force/encourage our son accept treatment at home. Maybe someday he will agree to it. We pray for that day to arrive, and for him to stay alive in the meantime. In our case, treatment centers are keeping him alive until he finally realizes that treatment at home will be the best, most consistent, and longest lasting “treatment center” on the planet! My point here is that there are many variables facing sufferers over age 18 and the family members who love them. Thank you for listening.
Thank you for your comment, Karen. To clarify, I am not addressing home treatment or inpatient here, just that F.E.A.S.T. doesn’t tell parents which clinic or treatment to pursue. There is a place for inpatient, residential, IOP, PH, and outpatient. Each family has to find our own solution for the time we’re at and the resources we have. No one can tell another family what is best, and so we don’t recommend providers.
I wish everyone had a range of choices and that all were of high quality. I wish we could have a foolproof way to know what to recommend for every situation. But my point here is that parents have to make their own decisions and not expect to be told what to do. And that’s what you’re saying, too, I think.
Janet Treasure, from South London Maudsley hospital, has written an excellent book which supports parents and caring persons who wish to support their ED-affected family member. It is called. Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method – and I found a copy for less than £5 on sale on the internet. It is wonderful and although would not advocate as ALL the advice being RIGHT for EVERY situation, it really really helps (especially with keeping one’s patience when at height of frustration!)
I was desperate for any information so thank you very much for the orientation