Lessons About Eating Disorders

What I Learned at the AED Meeting

I’ve exceeded my 1 week limit between posts, but I’ve got a really good excuse—I’ve spent the past 4 days at the Academy of Eating Disorders (AED) Annual Conference. So I thought I’d share some personal and hopefully meaningful observations about eating, recovery, and miscellaneous thoughts:

• Day one, 4 hours of workshop, and what did they serve at the refreshment break? Coffee, tea and water. Period. And I wanted calories. Food. I was hungry. Half a day learning about a treatment for anorexia and I couldn’t find anything to eat! But it only got better from there—really.



One of several courses eaten at Barley Swine

• I spent a large percentage of my 24 hours each day doing 2 things—learning about eating disorders and planning and arranging to eat—where to go, whom to go with, and what to order, to name a few. And I must say, Austin Texas has some fabulous food! My top picks?  Barley Swine and La Condesa—simply divine!

• Another evening we were 8—two in recovery from anorexia with 3 RDs, 2 therapists and a mom/eating disorder advocate—all eating out together. Can you even imagine? From my perspective it was fabulous. How about a round of applause for those recovering, brave enough to endure such a dinner?
• People appeared better in person than they had on the web. No, I’m not speaking of their physical attributes. But in person, their energy and warmth radiated, adding a whole level of beauty that truly got missed on line. Thoughts were shared and clarified without misunderstanding—it sure helps when you have more than 140 characters to explain yourself!

• Two of the diners are bloggers that I had a somewhat rough start with in the virtual world. Carrie and I, as I recall it, had long ago debated the implications of viewing eating disorders through the lens of biology, much as a conference panel debated labeling eating disorders as brain disorders. While Laura helped shake up my thinking on Family Based Treatment, yet supported my perspective about the important role for dietitians, typically omitted from this therapy.

Carrie, Cate and I before dinner.
(We didn't look any different after dinner, though!)

• Conflict leads to learning and change. If we all stuck with our same ways of doing things we would never grow and develop. We would perhaps feel safe, but would truly stifle our potential, our recovery even.
• Cate and I met for the first time, in spite of feeling I have known her forever. We met through this blog and we have inspired each other to change as well. And you’ll soon hear details about our upcoming book!

Dessert shared with another RD

Meaningful messages from the AED meeting

Connection

Connection helps recovery. A family member, treatment provider, friend, an internet-mentor—even one strong connection can make a difference. And involving your partner shows great promise, based on the research by Cynthia Bulik, PhD and Donald Baucom, PhD. So if you haven’t begun to share with your significant other, or no one knows your struggle, perhaps it’s time to change that.

Hope

“You’re the first person who ever told me I can recover”, I’ve been told far too many times. It is unfortunate. Recovery happens(a bumper sticker, perhaps?), but it doesn’t occur passively. It certainly takes work, your hard work, and a great deal of time. And there are slips, which you must prepare yourself for. Because slips happen (ok, another bumper sticker?) I hope those of you outside the states get the reference to a US bumper sticker—Shit Happens—it would be much funnier if you did!

So if your provider tells you that you can’t recover, then it’s time to find a new provider.

Blame

Blame is useless. Your mother didn’t cause your eating disorder, nor did your ex-boyfriend. Sure, environment can play a role in the development of eating disorders (just as perhaps your genetic predisposition and your personality type may have contributed). But it is most ineffective to focus on “why did I get this condition” or to blame yourself asking “what’s wrong with me, why can’t I change?” We all want answers, but the truth is, what we really need are solutions. And blame is clearly an obstacle to getting there.

Eating disorders are serious

I liked Laura (Collins) Lester-Mensch’s suggestion that we refer to eating disorders as treatable brain disorders. Sounds so serious, no? Even a bit scary—and rightfully so. Eating disorders need to be taken seriously. One in 10 people die from their eating disorder. And delaying treatment only makes the challenge greater for recovery. While we don’t know whether the brain is involved from the start of the eating disorder or as a result of the eating disorder, here’s what remains—the brain is involved, and nourishing it aids in recovery of the disordered thoughts, mood changes and of course, the physical consequences. The brain is not static—it is flexible, plastic, and changeable.

Perhaps viewing eating disorders as treatable brain disorders will allow us to have hope, remove the blame, and inspire us to connect with others without shame to support recovery.

As always, I care to hear your thoughts and reactions to these posts.

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: http://www.laurassoapbox.net

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 http://www.laurassoapbox.net/2011/10/why-words-matter-and-whose-job-it-is-to.html 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.