Meet ED

In my last post I talked about how I am on a mission (#Beedinformed) to do my part in educating parents and professionals about my intimate experience with anorexia via my immersion in the mindset of my patients for the last 16 years. I think it is one thing to think that your patients with this disease “think they are fat” and it is quite another to “walk in their shoes” and experience exactly what they do each waking moment of their lives. There was a time when I really didn’t believe that these girls were in so much pain. I am ashamed to admit it but I actually thought these girls were “superficial” and that they had somehow chosen to be part of this lifestyle that promotes the “perfect body”. I was, I think quite intolerant of the whole thing. Like many others, I judged them. They were the “pretty girls” who had it “all together”. What could be so bad for them?

That was before I vicariously experienced “the voice”. The voice of ED, Ana, and a host of other names that represent the same vile entity. Part of the work I do with the families is I have the patient actually speak for the voice. Letting the parents know, often for the first time, what is going on in their heads. It is usually a turning point for the parents when they realize their child who smiles on the outside is going through this hell on the inside. Here are some examples of what patients have said over the years when describing what the voice says to them:

“You are a disgusting fat sack of shit” “You know nothing and nobody cares about you” “You must be punished for what you ate today by running on the tread mill until you drop” “Your treatment team lies to you. I am the only one who will take care of you” “Don’t trust anyone. Lie to them, always” “If you do not listen to me I will punish you more” “You have eaten that cracker, no more food for you for the next 2 days” “You do not even deserve to drink water, you are repulsive”.

Imagine thinking this way, with every decision that has to be made about food and exercise, with every decision that has to be made about talking about feelings or not. It is beyond painful. Beyond exhausting. In traditional ED therapy we are trained to help these patients “talk back” to this ED voice. I used to do this at the beginning of treatment, when the patient was 70% of their ideal body weight. I never understood the bind I was putting these patients in. Sure, they can attempt to talk back to this bully. But, the bully eventually wins. I believe this is why we often see the pattern of weight gain followed by weight loss in traditional therapy. The patient just can’t endure the punishment they get for defying the ED. It is just too hard to maintain. So, they stop eating again or start to exercise more and they get instant relief from the voice.

With the family based approach and its focus on weight gain as the initial priority, I found a very different picture emerge regarding the way the voice affects the patients over time. I had always believed that the “battle” of talking back to the ED was one that would last forever, or for at least a very long time. However, the miracle of nutrition is a beautiful thing. With every 5-10 pounds gained, the patient will come in and describe a “lowering of the volume” of this voice. To the point where they say “it is now a whisper”. With weight getting in its normal range and especially after 1-3 cycles of the period, they then will tell me “it is gone.” “I don’t hear it anymore”. I can literally track a one to one correlation between the increase in weight and the decrease of the volume of the voice. They no longer have to fight it or talk back to it. There is nothing left to fight. All that is left is someone who “sometimes feels too fat in a bathing suit” or “sometimes doesn’t love their body”. What is left is a mirror of the condition of being a female in this culture – for all its good and bad points. We are taught from a very young age to be dissatisfied with something about ourselves, no matter how smart we are, how pretty we are, or how thin we are. I am not sure if we can ever fully rid ourselves of this internalized cultural voice. As far as my patients, I am very happy to have them go from “I am disgusting, repulsive, and need to protect the world from my ugliness” to “sometimes I don’t feel comfortable in a bathing suit”. I will take this as a victory.

#Beedinformed – My hope that families find this first…..

I have been doing a lot of thinking over the last week about how I can be most helpful to families that are struggling with a child who is diagnosed with the illness of anorexia. On this blog, I have begun to share my treatment approach, one that incorporates evidence based approaches offered within a framework of compassion and understanding. Over the last several entries, I shared the development of my current approach and where I have landed in my current thinking. However, I am always left with the feeling that I am not expressing myself as well as I would like to. You see, my thoughts about this disease spread beyond my ideas of how to treat it. It really begins with my thoughts on what it is. I learned in my training a long time ago that an accurate assessment drives an accurate treatment. But in this field, the lack of consensus of a clear understanding of what anorexia is daunting. How can we ever agree on how to treat it if we can’t even have a universal dialogue about what it is?

I have decided that part of my “mission” in this social media world is to try and bring some consensus to the field. This is a completely overwhelming task and I really sit here with no clear idea on how to even start such an undertaking on a large scale. However, I can start small…very small. And so my idea for #beedinformed was born. I am going to share my thoughts about what this disease is on facebook, twitter, and any other social media that I am part of. My sincere hope is that other professionals join in and share other pieces of relevant, current thinking about this disease. Wouldn’t it be wonderful if families could find this place as well? A place they could learn to trust as “the truth” about this disease. A place they would find first, instead of last.

My intention is to try and teach people what I see every day, all the time, in my office. The truth about the illness – its origins, its effects, and most importantly what things make it smaller and what things make it bigger. Things that families can do and things that therapists can do to extinguish it. I want to convey  my sense of responsibility to the families and to my colleagues. I truly understand this disease, even though I have never had it myself. I experience it all the time, from the inside out and have exclusively been “swimming in it” for the last 16 years of my professional life. I have absorbed this important information. I have been a diligent student.  And I am motivated to pass on this intimate knowledge of the illness to cause its demise, once and for all.

Closing the {Thigh} Gap – Part III

“All Life Stops Until You Eat”……..

This was revolutionary for me and for Stacey’s treatment team. Up until that point, Stacey’s treatment consisted of pleading with her, begging her, trying to convince her, and in general influence her to eat on her own. She was to follow a nutritionist’s meal plan. She was to choose the food, prepare the food (except dinner), plate the food, and eat the food entirely on her own. I believed that she could “do it” if she wanted to badly enough. Using family based treatment, all of this stopped. Completely. During all of the years of my treating her, Stacey had been eating on her own and also exercising on her own, despite offered direction and advice from the team. She was a runner.  In essence, she ran the way she wanted to run. How much, how fast, how often. Now, it all stopped. Completely. No more running until she gained the 10 pounds she needed to, got into the suggested weight range, and began to menstruate normally again. We were squarely in Stage 1 of FBT and boy was it rocky.

Stacey was as furious as Mom and Dad were empowered by this new approach. Stacey’s parents began to see themselves as much more instrumental in their daughter’s recovery. They were freed from the chains of guilt and all the passivity that comes with it – they knew they did not cause this. They also began to believe that they could actually be the agents of change that turn this whole ship around. They started to give consequences if Stacey threatened to go off the plan. They truly embraced the mantra that all of their family life stops until their sick child eats. They had never had to consequence their daughter before as she as a “good girl”. No history of oppositional behavior, not an ounce. So they were in foreign territory and feared they were “making things worse”. But, they followed my lead and when the anorexia reared its head, they always had a consequence at hand. They learned to work together and rely on each other’s strength. One of them supervised all of Stacey’s snacks and meals. Stacey was required to hang out at home instead of driving her car and then exercising if she felt like it. The anorexia was miserable. Stacey was not that far behind. She yelled, she shut down, she threatened to run away from home, she threw the food on the floor. And yet, here was the miracle: she ate. All of it. Every time.

Her weight started going up. It took six weeks. Six weeks for her to get into her weight range. After years and years of gaining and losing, being hospitalized, and being followed by a team. Six weeks. Now, was she cured at that time? No. But what started happening was something I had never seen so clearly before. The anorexia began to leave the building – it started to visibly and palpably diminish. It started with her thoughts – I noticed that after Stacey had been in her weight range for a while she talked about different things during the session. I couldn’t believe it when I realized that an entire session had gone by without her mentioning her “disgusting thighs”. I asked her about it, almost afraid to bring it up myself. She said “Yeah, I still don’t like my thighs but I have other things to think about now”. I couldn’t believe it. There was now space for new things besides food and weight. She began to talk about her friends, and her struggle to be “popular”. She had always had some social anxiety, way before the anorexia started. And now, like a layer being lifted, the anorexia was disappearing and revealing what was always there – a sensitive, somewhat anxious girl who was afraid of not being quite good enough and being left behind. Despite years of me using my best tools and techniques, I had never been able to lift that obsessive/rigid layer like the weight gain was able to in a matter of months.

In our sessions, we began to focus on weight and food much less. We just didn’t need to anymore. When it came time to move into Stage 2 of FBT we were all a little bit nervous. Stacey handled it like a pro. She was motivated to run again and to “not be a baby” and have her parents supervising her meals any more. Over several months, she tried out a little bit at a time until she could eat her meal plan on her own. She worked with the nutritionist now (vs. her mom being the primary person working with the nutritionist) on creating more variety in her plan. She agreed on having 1-2 “fun foods” per week and she was always able to keep her anxiety from getting too high when she ate them. She said one day “I know that a cookie won’t make me fat”. When she got her period for the first time, there was a nice jump in her ability to tolerate new foods and an overall reduction in her anxiety over eating anything “not healthy”.  She began to run again and this is where I got very nervous. She had a history of running to the point of exhaustion. However, this time it was different. After months of staying away from it, returning this time was different for her. She reported that she liked to run now as it “makes me feel strong”. She no longer counted calories when she ran and seemed to enjoy it vs. thinking about it as a chore. The ED voice that had lived in her head for years was gone. She said one day, pointing to her head, “I only have me up here now”.

I was amazed by all of these changes. I was still basically the same therapist, just adopting a new technique. But three things were now radically changed – I had no longer made it her choice whether to eat or not, I had empowered her parents to follow my lead in this, and I had given the parents structure and support throughout this daunting task. Unlike traditional FBT that only has one supervised meal during the assessment phase, I offered many supervised and coached eating experiences. This is where I saw so much change occur. Both in the growing strength and clarity of the parents and the growing weakness of Stacey’s disease, bending under the weight of the team’s demands. All of this led to a brain that was no longer starving. A brain which could now think and reason. It was truly a beautiful thing.

Stacey made it to college in the Fall. She had phone sessions with me  and her nutritionist weekly for the entire first semester, saw me in person when she was home on all holidays, and was followed by her student health center where she was weighed weekly and this weight was passed on to her home team. She had a contract that identified potential consequences if there were any significant weight loss, which included taking a semester off if we felt she needed to. It turns out, she didn’t need to. She graduated from college and considers herself “fully recovered”. She continues to let me know how she is doing every once in a while. She is a strong, beautiful, kind, smart young woman. I am so grateful for my experience with Stacey. It changed everything for me and I have never looked back.

Closing the {Thigh} Gap, Part II

I knew I needed to do something different. I had been seeing Stacey for years and while some changes had occurred in her life for the better, I truly believed the eating disorder remained untouched. I had never really seen it this way before. I had never really seen the disease as such a separate entity. I had utilized narrative techniques, externalizing the eating disorder to the patient so that they are not so tied up in it. I had referred to the eating disorder as “ED” or “Ana”. However, I had never experienced it as separate during the work with the patient. I had never seen so clearly that other things can change in the patient’s functioning (anxiety, depression, irritability, assertiveness, sense of self) and in the family functioning (communication, boundaries, loyalties) but that the anorexia just could sit there untouched. I began to see the pure presence of it. The reality of it. I even began to dream about it. Anorexia finally stepped forward in all of its ghastliness and power and I was truly overcome. All of my “tools” were ineffective. It was like throwing jello on a wall…nothing stuck. I really believe it was this experience that for the first time showed me the “enemy” in its true form, without being veiled by my own projections, prejudices, or anxieties.

I know this sounds dramatic. I am reading it and thinking that unless you work with clients like this (or are a client like this) you will think I am being unnecessarily strong in my language. But that is just the point. I, like most of you, would have thought the same thing…”It is not like they are possessed by something… they should be able to fight this themselves”. But, I began to realize on that day years ago that these girls are possessed. Their thoughts are not their own. Their will is not their own. No amount of telling themselves to “use your voice” or “love their body” is strong enough to fight this voice inside of them that is telling them everything, all the time. All the time. They have no choice but to listen and Stacey had no choice but to submit to its demands – to eat limited calories, to exercise until her body ached, and to hate her thighs with utter disgust and repulsion. This was the disease’s demands and Stacey was drowning, losing herself to its rules.

I started thinking in a different way: “If this disease is so strong and its voice is so strong, how can I be a stronger voice?” “How can I get this patient to listen to me instead of the disease?” I had tried every technique in the book and she still wouldn’t eat. Everyone knows that getting an anorexic to eat is impossible. Right?  Well, family based treatment (FBT) thinks differently. FBT says that we, the grown ups and the treatment team create a situation in which it becomes impossible for the patient to NOT eat. The environment is changed around the child. Contingencies are given for doing what they are told to do. The parents are viewed as the primary change agent, not the child (at least in the initial work). The parents (as part of the team) become stronger than the disease. The voice of the unified, empowered team becomes more compelling to the patient than the anorexia. Strong and unwavering – a brick wall. With one message and one message only: “All life stops until you eat”.

Please check in next week for Closing the {Thigh} Gap, Part III. Thank you!