Many topics have been swirling in my head this past week that I want to share but after seeing a very moving video, one took precedence. A mother in Australia gave birth to twins and was told that one, the baby boy, had died upon coming into the world. She told the doctors that she wanted to say good-bye and also wanted to try and “entice” him to possibly stay with her in the world by talking to him and telling him how much he was loved. She and her husband lay there, bare chested to give off their heat and scent, with the baby for two hours. Within 5 minutes, the baby started making movements but the doctors continued to tell the couple that the baby was dead and these were just “reflexes”. The mom continued to talk to the baby, hold him, and soon the baby opened his eyes. The doctor STILL didn’t believe that the baby was alive until he finally came back into the room and saw the proof in front of him. The couple has their baby back and it is being hailed as a medical miracle. http://tiny.cc/anu5fx.

My thoughts? It is a miracle, no doubt. But this miracle would never have happened if the mom in this case did not follow her instincts to interact with her baby in the way that felt right to her. Despite the doctors, despite the medical precedent, despite the pressure to move on. This mother knew what was best for her baby. I am so touched by this story because in my line of work I see this every day. Moms (and sometimes Dads) will call me crying on the phone saying they don’t know what to do to help their child. All they know is their child is sick and possibly dying from this illness called anorexia. The children have been often hospitalized multiple times and remain sick. The mother sees the child suffering, drowning in something much bigger than they are. They are losing the child they once knew. They are terrified and have been told at best that there is “nothing they can do to help” or at worst that “they are the cause of the child’s illness”. They are overwhelmed with guilt, confusion, helplessness and terror.

Traditionally, our field has done these mothers wrong. We have marginalized them, made them the “bad guys”, and kept them in the dark about their child’s anorexia. If their child was diagnosed with diabetes, the team would not think twice about empowering the parent with knowledge and strength to be a key team member to help with their child’s illness. We would give them the insulin syringes and teach them how to inject the medicine into their children. We would empower them by teaching them about how the illness has overtaken the child and what they can do to help manage its effects. We would never think to keep them out in the waiting room, in the dark, unaware of the treatment plan. But this happens every day with parents of children and adolescents with anorexia. Family based treatment turns this practice on its head. Not only are parents acknowledged, they are empowered. Not only are they not blamed for causing their child’s illness, they are taught that they are often the key to turning this illness around.

It is a beautiful thing to see these mothers and fathers with their children at the conclusion of treatment. Not only are the children now better and the parent says to me “my kid is back,” but the parent feels wonderfully empowered and victorious over this illness that wanted to claim their child as its own. Just like the mom holding her new born son who is now opening his eyes in response to her warmth and voice, these parents experience incredible joy in knowing that they were the key in bringing their once sick child back to life. It has been my honor to help these parents experience such triumph.

There is so much confusion and controversy when it comes to the issue of choice and anorexia. Some believe that getting the illness is “a choice.” Some feel that you do not choose the illness but  you can choose to get better from it. I believe that this comes from a significant misunderstanding of what the disease is. I don’t think most of us would say becoming schizophrenic is a “choice.” However, many of us (or most of us if we are women) have tried to “look better,” or “lose weight,” or “be thin.” So unfortunately, we project this very common occurrence of trying to change our bodies onto those who have fallen down the rabbit hole of anorexia. For those of us who do not have the switch that flips in our brain to anorexia, it is indeed a choice. We can choose to lose more weight, stop losing weight, and change our eating to reflect more or less healthy choices during our day. However, those folks who are unfortunate enough to have their brain switch into this illness no longer have this luxury of control. What once started as something that was a choice – “I would like to become healthier and eat better,” has now moved into a very different realm of lack of choice. The disease now dictates, “you will not eat any fat and if you do, you will burn it off by running until you drop.”  The disease also makes choosing anything that has to do with food impossible – “you will not eat that, but, you are hungry so you will cook for others and watch them eat,” or “you are a big fat pig and you will stare in the refrigerator but not be able to decide to eat anything, as any calories are too much for you!” The disease takes away all clarity of choice. It imprisons the patients it affects, totally and completely.

Choices. “The patient can choose to get better, but needs more insight.”  “The patient can choose to get better but their dysfunctional family is holding them back.” “The patient can choose to get better but our sick culture is impacting them”. I disagree with all of the above. The patient can NOT choose, they are too sick. They need help! We must make the choice for them. We must relieve them of the torture of making food choices. We must relieve them of the burden of trying to fight this illness in one breath and then in the next succumb to its power. We must make the choices. We, the treatment team. We, the parents. We, the spouses. We are the ones who can lend the patients our strength and our voice while they have neither. We need to pull them from the depths of the rabbit hole. They CAN NOT do this on their own. I am completely stunned as to why the field hasn’t caught up to this thinking but instead feels it is “disrespectful” and “invalidating” to offer this type of help. I believe this utter lack of understanding of the illness is linked to the fact that this disease has the highest mortality rate. These patients can not turn this around themselves. This is NOT another diet. This is NOT a self-indulgent “vanity” that the child or adult needs to “just get over”. They can not. I will write more about the illness over time and everything I have learned about it. The darkness and the ugliness and the relentlessness that kills these patients.

It is the most confusing thing that the goal of most of our culture is to obtain what this disease wants as well  – thinness. How can we truly see the viciousness in the illness when most of us want what it proclaims as its ultimate goal – to be thin, to be powerful, to be confident, to be beautiful. I don’t think there is any other mental illness that promotes something that all of us envy like anorexia does. Most mental illnesses result in confusion, loss, isolation, and decreased functioning. There is nothing very attractive about that. So, we understand that these illnesses are something we need to help with. We have empathy, compassion and are willing to take a leadership role in helping these patients. But, what about those “pretty girls” who complain about “being too fat?” Sometimes it is hard to feel sorry for someone who is achieving what the whole world wants to achieve….

We need to gain a clearer perspective. The disease needs to be the focus, not the thinness that results from the disease.  We need to be educated. We need to take control and help eradicate this illness. Patients are dying and they need our help.

I have been wanting to write about my thoughts on this topic for years now. I have just been too reluctant for many reasons, mostly neurotic ones – “No one will read it”, “No one will care”, “There are so many amazing thinkers and writers out there, how can I make a difference?” These ideas were sitting in my mind, brewing, without direction and I was lacking the confidence to move them from my inner voice to paper. But like so many things in life, this self-hindering process changed in a moment. I have a client, let’s call her Michelle, who recently finished a year of treatment with me. She came in as a “chronic” anorexic – a history of 14 years of the illness- and went through my intensive program in which her husband helped to re-feed her until she was able to eat normally on her own (yes, you read that right, her husband was instrumental in supervising her eating while she was sick). It is now a year later and she is for the most part anorexic free. She exercises and eats on her own, accepts her body where it is even if she doesn’t love it, is no longer feeling trapped or depressed, and is fully empowered to step into her life. One day, we were talking about her recovery and she declared emphatically “I don’t want to be in recovery from anorexia, I want to be fully recovered!”

It was a powerful moment, a true shift in her self-perception and clearly it impacted me as well. I had never had a patient clarify things for me like this. But, this statement summarized so beautifully all of the work I had been doing with her so far. Everything I had said, done, implied, wished, and hoped for when it came to her and all my other patients. I didn’t want them to be on an alternate path of the anorexia titled “I am in recovery”. I wanted them done with it, finished with it, competely and totally. Full Recovery. It is what I had been taught as a young psychologist to never hope for when it came to these patients. I would hear “Ellen, these patients never really get better, they just learn to manage their illness”. Or, “Ellen, this is the hardest mental illness to treat with the highest mortality rate, don’t kid yourself that you can actually cure it”. So, I admit for the first part of my career, I, like many patients never peeked beyond the partition that separates this partially recovered state from true complete healing. This lack of truly getting better was something I had come to accept as part of working in this specialized field.

But everything changed about twelve years ago when I shifted radically from my more psychodynamic thoughts on anorexia to a family based and behavioral paradigm (much more about this transition later…..). Long story short, for the first time, not only did the patients respond quite rapidly to this change in intervention but when treatment was over, they were done with the illness. I mean DONE. I don’t mean acting “as if” they were done or hoping they were done but just plain done. I began to say in my sessions “The anorexia has left the building” and the loved ones and patients would nod their heads in agreement but quickly shake their heads in disbelief as to “how this could have happened” as they were told their loved ones would “never really get better”.

So, my goals for this blog are twofold so far – 1-to not have it run too long (which I already am at risk for not achieving), and 2- to highlight for you the reader my thinking as to what leads to the ultimate outcome of true recovery. Why have I named it the 10 pound blog? Again, without getting into all of my thoughts right away, I am now, after 12 years, utterly and totally convinced that the difference between many patients being in a partially recovered vs. fully recovered state is just that – about 10 pounds. Yes, some need more, but most don’t. This was also a surprise to me. I was sure that these “sick” patients would need to gain much more (and to them 10 pounds feels like 100) but objectively, I was shocked that time and time again they were simply walking around 10 pounds under their full goal weight. As soon as these patients were pushed to gained this weight, I saw a significant shift in their thinking – the disease receded – and the veil was lifted that revealed true recovery.

A key phrase you may have noticed above is “the patient was pushed” to gain weight. This speaks to my allegiance to conceptualizing anorexia as a brain based illness which needs to be actively treated with its medicine – food. I used to be of a very different ilk – I used to think that “pushing” a patient to eat was disrespectful and invalidating of the person. I used to wait and wait (…..and wait and wait and wait and wait)… until the patient herself declared that they were ready to eat on their own (if this even ever happened). I am now very clear that this pushing to eat is an invalidation of the disease which has overtaken the person. The patient needs help, even when the disease won’t let them ask for any help.

I hope in some small way the wisdom that is shared here from me and sometimes gleaned from my patients or other colleagues will be a small influence in even one patient’s quest for full recovery. I would like to reassure even one person that full recovery is not a mirage.  It can truly be reached through the influence of an informed, compassionate treatment team.