KNOW YOUR TREATMENT RIGHTS
A message from founder, Mary Jane Lawson
During the early years of my treatment in the late 1980's I experienced extremely harsh and punitive treatment. It was not only unjust, and (in my opinion) unethical, but and a violation of many of my rights - as a patient, as a child, and as a human being. I was treated more like a criminal than a child suffering a serious, life-threatening illness and a background of sexual abuse. The very people who were suppose to help me, traumatized me further. As a minor I felt helpless and unheard as I was given no voice in terms of how I was treated, so when I became an adult I quickly learnt about my rights. Nonetheless, asserting them remained a challenge throughout adulthood, as many treatment regimes which I did not believe were in my best interest continued to be forced upon me. This only served to compound my trauma background.
Whether you are a parent of a child with an eating disorder, or an adult battling with an eating disorder, I want to prevent this from happening to you. I want to be clear in stating that I am not encouraging the rejection of life-saving treatment. There a clearly instances where medical care is crucial to avoid the common and potentially fatal complications of re-feeding syndrome. What I am promoting is for you to be informed about, and to assert you rights, especially once you are out of the physical "danger-zone". No matter who you are, where in the world you are being treated and whether or not you are a voluntary patient, you deserve compassion, choice, to feel heard and respected, and to be treated as an individual. All too often the system dismisses the voices of patients and confused families, and they are left at the mercy of current "protocol" and "one-size-fits-all" programs, which I see are exacerbating many of the problems we face, and traumatizing and failing so many people.
One of the most distressing elements of treatment for me within the hospital/medical system was being forced to consume foods and supplements (either orally or through a tube) which I now, as an adult, I know have not assisted me in nutritional rehabilitation (i.e. a focus on processed fats and carbs but not on essential vitamins and minerals). In not refusing to eat altogether; I was simply asserting my right to choose what I ate, which was based on my personal beliefs and knowledge about nutrition. In the process of gaining tertiary qualification in the field of public health I have extensively read the existing relevant peer-reviewed literature, particularly regarding nutrition. So many other women have reported a shared experience at being told that our beliefs are simply “irrational” and reflective of anorexia and a “starved brain”. Some doctors and dieticians immediately assert that someone with a starved brain is not competent to participate in their own care and recovery. This arms the professional with the prerogative to enforce almost any treatment. The argument by them has always been that it is treatment protocol recommended under state and federal guidelines for the treatment of anorexia. However, people have rights. This is not law, and the literature clearly demonstrates inefficacy of the longstanding current paradigm. Therefore, one must question the ethics of conventional and current treatment regimes where unfounded methods of control override opportunities for patient alliance and empowerment, and most importantly, long-term efficacy. I hypothesize that when working with and empowering sufferers, calorie and macro-nutritional consumption (i.e. carbohydrates, protein and fat requirements) thresholds can still be met – without the adversarial environment. Eating disorders are renowned for being founded on traumatic and/or repeated events where control has been denied. Thus, it is precisely this empowerment that will begin to address the underlying etiology of the individual with an eating disorder.
I am not ignoring the paramount necessity of immediate re-feeding in acute, imminently life-threatening cases. However, the vast majority of instances involve enforcement of continued re-feeding after medical stabilisation, which ignores its exacerbation of the chronic underlying issues. I believe this has contributed greatly to the exceptionally high relapse rates, a doubling in death rates over the past few decades, and the unacceptably low long-term recovery rates for anorexia.
I want to emphasise that my goal is certainly not to disrespect the imperative role of doctors and the contribution that dieticians can make. On the contrary, I want to support and contribute to scientific reporting of any efforts made by professionals to innovate the way anorexia is perceived and treated, and most importantly, to improve the current dismal relapse and recovery rates, and general wellbeing of sufferers and their families. This advancement in perception, treatment and positive outcomes is the goal of RED HOUSE.
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