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.

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