I just wanted to let you know how great I think your work is around eating disorder awareness and FBT. I think you and other parents/providers working with MM are on the right (and innovative!) track in terms of conceptualizing tx for eating disorders.
I’m a patient who has had anorexia for 20 years – I am 32 years old and was diagnosed with AN when I was 12. When I first heard of Maudsley about 5 years ago, or so, I was somewhat appalled at the idea of parents ‘force-feeding’ (which I now know is not the case!) their anorexic children – all of the misinformation with which I’d been brainwashed through years of traditional ED treatment had me convinced that forcing an anorexic to eat was cruel! While MM would not have been an option for me, due to chronic abuse in my home environment, I’ve come full circle in realizing how much this method truly makes sense, in appropriate situations.
To elaborate, I’ve had many, many stints in treatment settings of all kinds – including one inpatient stay lasting two years. I’ve been labled “chronic and treatment resistant” and while I have maintained a desire to recover, I have found true change elusive. Through traditional treatment, I have gained insight upon insight into the mechanics of my eating disorder, which is largely trauma-based, and yet for all the treatment days, dollars, and wasted time, I had yet to make any considerable and lasting gains in terms of my symptoms.
I would enter treatment, restore weight/health, and then be discharged and immediately fall back in the same cycle. I had many ‘expert’ treatment teams and yet with each one, the ED would find loopholes in their treatments and ways to stay in control. I was told it was my ‘choice’ and when I tried to explain otherwise, I would be further slapped with labels like “manipulative” or “failing to take responsibility.” I found traditional tx to be rather punitive. They would let my health spiral downwards until finally someone would corral me into treatment yet again.
Fast forward to five years ago, when I began treatment with a psychologist who had no experience in treating eating disorders. I was in a period of my disorder then where I was relatively stable and was seeking to further work on my trauma history, hopefully to put it behind me for good (easier said than done!!). For a few years, we farmed the ED tx out to other specialists – RDs, groups, an IP/PHP programs…and each time, I would feel that it just wasn’t connecting.
Being a non-ED provider, he was also perplexed at what appeared to be a broken and ineffective way of treating eating disorders. He was stymied by the fact that once out of the hospital, I was seemingly unable to eat, and yet the RD would leave me to meal planning, etc. and a ‘contract’ that stated I needed to get 75% of my meal plan in a day. His question: “Why would anyone agree that you only need 75% of your minimum nutritional requirements?!” It was clear to him what needed to happen, and that was full nutrition, right away, with no allowance for my ED.
About a year ago, he decided, with my permission and help, to take a more active stance in my ED recovery, since clearly traditional tx was not helping me get anywhere. His instincts are much like that of MM parents – full nutrition needs to be a non-optional requirement for participation in life (and in this case, treatment with him). There is no more negotiating with the ED, no more whittling down the plan to be 85%, or only include xyz foods. It is refreshing to no longer have to sit and discuss ad nauseum my feelings about eating pizza, or carbohydrates, or fat, or whatever – and just be encouraged firmly to DO it. He realizes that while the ED can sound logical and has run circles around the best of the best care teams, there is no logic or compromising with it. He helps me make menus that include all sorts of ‘forbidden’ foods, and once the menu is made, there is no negotiating or changing it.
While it may seem improbable, for the first time in my 20 year treatment history, a treatment provider is absolutely insisting that I eat full nutrition every day, and is no longer leaving me the option. If a meal is not completed 100% per our agreed upon menu, I head to the hospital. I have to contact him after every meal to let him know I completed it. While it is difficult to do this on my own, at home by myself, knowing that I have an advocate against the ED is a tremendous relief. There are times the ED tries to pull me off course and fights back, and fights with him, tearfully pleading for reprieve, but we continue to try to fight against this illness that has haunted me for over half my life. I’ve had other providers tell me they think what he requires is ‘cruel’ and will set up power struggles and a feeling of loss of control, but really, this approach is the ONLY thing that has worked.
The proof of its efficacy is in the outcome so far – I am eating foods that I’ve never had before in twenty years. I am also doing the best I have symptomatically than I ever have in 20 years. Many of the AN traits are diminishing with full nutrition.
And all of this is with the outpatient help of a non-ED clinician who really just instinctually guided us in the right direction!! When I then found your bulletin board and blog, I realized that others had discovered similar methods and were met with success, too. I am now hopeful that I will continue to move forward and be able to heal both from the years of AN as well as my past trauma.
For parents who fear their child’s anger or rejection – the only lasting resentment or anger I (not my ED!) feel is not towards the therapist who is finally helping me by insisting on my having full nutrition no matter what, but towards the countless therapists, doctors, hospitals, dietitians, etc. who believed that their traditional treatment model was the only way to treat my anorexia, even if it was proven ineffective and kept me suspended in the disorder for years without the relief that comes from proper nutrition all the time, not just in an inpatient or medical setting. It seems preposterous in retrospect that a trained ED treatment team would negotiate my weight and nutrition goals with me week after week, as though anything I could possibly say or offer was in my best interest, rational, or logical.
Thanks again for working for change –