Monday, October 10, 2011

Making Enemies 101: Tips From the Blogosphere

Anger. All I could feel was their anger. Their perhaps valuable messages got muffled, but I was left with my tail between my legs. That was my experience of reading a couple of blogs I respect and frequent often, one with a focus on eating disorder recovery, one on size acceptance of the obese. No doubt this post of mine may provoke more anger—that is not my intent. And while these two topics may seem vastly different, I hope to show that they have many commonalities.

Laura's Soap Box

I have learned a lot from Laura’s Soap Box:

It has, more than anything, strengthened my stance that we have no time to waste, when it comes to recovery; that the ever-hopeful practitioners that patiently wait while engaging in therapy often do so for way too long. And especially for the young anorexics and those new to their eating disorder behaviors and thoughts, those with a narrow window of time for weight restoration for growth and development, for preventing hard-wiring of their approach to eating. The parenting style, more loving tiger mom than most of us like to approach, has its merits. Yes, for survival and health, it takes a tough parental stand.

Yet when I read the post I was struck not by this very appropriate message, but by the anger and frustration at parents and practitioners who haven’t mastered the art of (eek) Maudsley? Family-Based Therapy? Modified? I’ll refer to it as Maudsley-style from this point forward, so as not to incite more anger.

I’m guilty. 

It's a long way to travel to get to where we need to be.
I admit it. In my 25 years practicing as a dietitian, I have never formally been taught this approach. (Nor, for that matter, was I formally trained in an academic setting on eating disorders; they were only minimally covered in my graduate studies). I have learned what I know by educating myself through eating disorder conferences, literature, as well as more recently through blogs like hers. And, through seeing vast numbers of eating disordered individuals over my career. From my understanding, in this approach, nutritionists/RD have no place. But that’s another story. In my version, RDs play a very valuable role.

Anorexia recovery is not one-size-fits all.     

Many families I see are not candidates for this approach. Some are quite dysfunctional, frequently making supervision at mealtimes disastrous; it would take years to educate them about their inappropriate messages, to correct their nutrition misinformation—I could go on. And we just don’t have that kind of time. Caution: I am in no way suggesting that these dysfunctional families caused their child’s eating disorder, merely that they are in no position to take charge of the recovery.

Some families aren’t candidates, as I see it, as they have too many other demands, such as caring for another family member—a parent, a child with special needs, a newborn, working multiple jobs, etc.
Some families certainly could learn to use a Maudsley-style approach—if they were prepared to take the time. Yet I find many parents want their kids fixed—they bring them for care with an unrealistic perspective on what recovery entails, how it is measured and how long it might take. And most importantly, they have no idea how important a role they play as parents, Maudsley-style or non-Maudsley-style.

I say some intentionally. Many parents couldn’t be further from this description. They are present, physically, and emotionally for their kids; they are anxious to know just what they could do to help their child, and how best to do it, and they adjust their schedules to make treatment appointments a priority. They are scared, but they work on accepting that treatment is a process and takes time. 

In such families, some of the kids with anorexia may be supported by their parents, without the parents having the level of supervision and involvement I understand a Maudsley-type approach to have. They set appropriate safety limits, from a health standpoint (ie—they respect and enforce the outpatient team’s recommendation that there is to be no physical activity, for now). But their children are able to make progress, measurable progress with weight restoration and vital sign changes, that enable them to continue in this setting, without their parents taking charge of their food plating or supervising their snacks. And they are able to engage in therapy, both mental health counseling as well as nutritional counseling in the process.

But then there are those for whom the Maudsley-style approach is perfect. A willing family, with the time it takes to be an active player, to be intimately involved in refeeding. Parents willing to shift the relationship to that of supportive team members, fighting the anorexia along side their child, taking charge the way their unhealthy child can’t, at this time. And I have seen recovery with both these approaches.

Treatment for eating disorders needs to be as varied as the individuals with the eating disorders. As health care providers, we too are not a homogeneous group, not by specialty, not by style and approach. We also get frustrated and angry, when we encounter patients and families, as well as other medical providers who fail to support our stand, to set appropriate limits to ensure recovery. We too recognize that it takes a nourished mind to engage in the process of recovery and decision-making, a role many starving anorexics simply cannot do.

I believe we all share the very same goal—to foster recovery and normalize life for the individual as well as the family dealing with anorexia. And we need to stand united in this goal. There is no single best treatment for all individuals. But educating with a consistent message about the seriousness of eating disorders of all types and the need for treatment and support is essential.

We put our heart and soul into doing the work we do.  But few will respond well when faced with angry rants—by me, by parents, or by Maudsely-style bloggers. We, too, are works in progress.  

And yes, I will soon address the other angry blog in an upcoming post.


  1. I think anger can be a great motivator. It reminds us of the real danger and real need for immediate action when it comes to eating disorder treatment. But so often in blogging, as in life, this anger can alienate the wrong people; the people who are affected by the anger are more often than not the people who would actually have been the most likely to listen. Those who could do with hearing these messages of anger and frustration are sadly never the ones listening anyway.
    And I suspect the reason you felt this anger so acutely was the fact that you truly do put your heart and soul into your work - this is so obvious here on your blog.

  2. Let me try an analogy on you? If we were talking about diabetes, for example, would it change your stance?

    Wouldn't you start with the assumption that patients need, and deserve, parents who will step up, learn what they need, make and keep appointments, take care of shopping and cooking, monitor for symptoms, and create a home environment safe for treatment and maintenance?

    Would you at an intake appointment believe that the family "might" be able to do what is needed? More to the point, do you think the family senses your skepticism?

    As a clinician, would you consider cutting the parents out of the picture because of their weaknesses and flaws, or would you start where they are and do everything you can to get them to a better place? Would you be thinking of success stories, or failures?

    The truth is, patients with eating disorders who don't have parents who are ready to step up are far less likely to recover. Period. They're far less likely to thrive in many ways. They are also quite rare - the exception. A lot depends on the clinical stance. If they have clinical care that doesn't do EVERYTHING possible to get that family in a good place they are also less likely to recover.

    We don't do less to help families facing cancer, or diabetes, or a car accident because they aren't perfect or even functional - we know that the family has far more influence and agency than anyone else and CAN NOT be marginalized in the process without grave risk to the patient. It just isn't an option.

    And who decides? A clinician with an hour or two experience with a family in crisis? The parents themselves? Social services?

    Hiker, clinicians who fail to START with optimism, belief in the family, and the knowledge that without the family the patient is in even worse shape than they might be even in the most dysfunctional environment, great harm can occur. Inadvertent, well-meaning, but genuine harm. That's where the anger comes from.

    Our family experienced that, and I see countless families go through it as well. When my husband and I were guilty until proved innocent, marginalized, and held at arm's length we WERE poor caregivers. When we were empowered, coached, educated, and believed in we did pretty heroic work as a family. Same family, same illness - very different outcome.

    Really, there are no "Maudsley-style bloggers." There are just individual people, like me, and each of us are different and none of us agree on everything. I applaud your anger and frustration at me and others - and look forward to your insights along the way. You care and you're engaging. That's the point - for all of us.

  3. @ Laura First, thank you for dropping by to respond!
    For clarification:
    -I always start with the belief that there is the potential for change, both for the child and for the family.
    -parents should never be "cut out of the picture" if they are living in the same home. Nonetheless, just how involved they are and need to be varies with each situation. Most importantly, all parents need to set appropriate limits, have food available, be supportive, and bring their child to the necessary appointments. But they don't all need to play the role of measuring, plating and supervising meals--if the child is successful at doing so, for instance.
    -so let's take diabetes. A newly diagnosed Type 1 diabetic child is often admitted to the hospital at the onset of their disease for education and management. A CDE and RD as well as MD are often doing the decision making subsequently, as the family adjusts and learns how to manage--how to adjust the insulin, adjust carbohydrate intake for changes in physical activity, etc. And the degree of involvement of the parents varies with the age and competency of the child.Even a pre-adolescent, for instance, is taught to test his own blood sugar, is taught to monitor for symptoms, and educated how to treat a low blood sugar. Yes, parents, too are brought in. Of course. But I don't think this analogy holds.

    As for how rare it is to find families not ready to step up--it is unfortunate, but true, that it is far from uncommon. Remember that the population you encounter is seeking help, perhaps via the internet or is self motivated to read your book. But patients show up to see providers like me because they have to, because their MD sent, because their child is losing her hair, because others are commenting, etc--not necessarily because they are concerned (of course, some come very concerned, too). Often they are in denial, or believe it will just go away. They believe their child needed to lose a few pounds anyway, perhaps. I could go on. Trust me, this is way too common--it is not rare at all. They complain about their daughter not being able to dance, or missing a soccer game for appointments. They want to spread things out appt-wise, but want us to okay their child playing multiple sports in a season. Really, I could go on.

    In the ideal world, families would be able to support their child in recovery, help feed them, set appropriate limits on their physical activity and see the progress that prevents secondary effects from anorexia. Wouldn't we al like to see this?

    Finally, it is unfortunate that you and your family were considered poor caregivers and inappropriately prejudged. The medical community has it's work to so--that is for certain.

  4. We have the same goal.

    The way you are talking about families above is a stance that could make you not a candidate for offering a family-based approach. But it doesn't mean those families might not be excellent candidates for the approach with a nutritionist who has a different stance and training.

    All the family situations you describe that are "not ready to step up" are indeed typical. We were one of them. Those are normal families and normal attitudes - because families don't start out knowing what an eating disorder is, what the dangers are, how many wrong ideas they have about weight and nutrition and mental health, or what heroic work they are going to need to do - THAT'S WHERE GOOD CLINICAL CARE COMES IN. Eating disorder professionals' job is to get families from that bewildered, clueless, frightened place to where they need to be. You can't do the job without them. You are not describing dysfunctional toxic people - you are describing EXACTLY the people who need your help, your specialized help, to save their children's life. They are also the same people that, when not actively involved in the team, undermine recovery.

    THEIR learning curve, and your professional skill at guiding them, is what makes the difference.

    Children in charge of their own meal planning? Professionals giving children instruction on meal planning? I'm not a fan of that with ANY illness. If the justification for that is that the parents are clueless then you have a FAR greater problem at hand. But a young person with an eating disorder being in charge of their own meal planning and monitoring? They have a mental illness that skews their judgement, makes them incredibly anxious - they are mentally ill and without normalized nutrition will stay that way.

    Family-Based Maudsley Treatment is only one way to address all of the above - there are others. But FBT - the manualized, trained kind - is all about taking a family in crisis and chaos and lack of understanding and getting them to a place that no clinician can do alone with a patient - and unless the family is so toxic and unwell as to require foster care or legal intervention, clinicians should be working closely with the family no matter what approach or combination of approaches they are using.

  5. @Laura I would welcome any recommended reading that you believe best addresses the Maudsley approach/FBT protocol.

    Also please note that when we use the word children, we are describing a large and variable group of individuals--10 year olds and 17 year olds are quite different, and themselves quite variable. But no "child" is put in charge, without regular medical check ins and accountability to a nutritional plan.

  6. As a parent advocate what I would recommend to any provider treating eating disorder patients is actual training with clinicians who are experienced and have demonstrated skills in FBT/Maudsley. The books are good, but only as intellectual preparation. Without really working it through, talking it out, and watching families from intake to discharge I find that it is hard to completely conceptualize the difference between clinical stances.

    I've had many clinicians tell me that there were not one but several 'light-bulb moments' that they had to go through to get from where they were to where they ended up. It was challenging, too. But they also say that they really enjoyed their work more - partly because they were more successful, but also because they were less frustrated by the interactions with patients and families.

    It's possible you'd get the training and not change much in your approach. You may not find it helpful and you may not agree with it even understanding it better. I do think that anyone treating eating disorders should at least explore it - and that families of patients of all ages should at least know about the option and be able to discuss it with people who are skilled and trained in it when choosing who to work with.

    I really appreciate your willingness to discuss it. Your blog is great.