by Abby Sarrett-Cooper
My job is to empower parents to do the hardest job they can ever do – save their child’s life from the grips of an eating disorder.
Many parents are in crisis when they contact me. They are terrified of what has happened to their child and acutely aware of the life-threatening nature of eating disorders. Others come in unaware of the nature and extent of the disease’s impact on their child. Many come to me with feelings of guilt and bewilderment along with their fear.
As a Licensed Professional Counselor and a Certified Eating Disorder Specialist, parents come to me for the answers, for the solution, to fix or heal their child. They are unprepared for me to tell them that they are the most important part of the solution.
In the United States where I practice, healthcare decisions are often determined by the dictates of private insurance. Under that system, higher levels of care, provided by for-profit organizations, receive higher rates of reimbursement. Historically, this has resulted in the belief that better treatment is found at these expensive higher levels of care. Parents are then removed from any role in the care and recovery of their child. Then, not surprisingly, the progress that is made in residential care is typically not maintained upon discharge back home. At some point every person with an eating disorder must recover within the context of their life. How is that supposed to happen if parents and family members are removed from the
equation? This entire paradigm for traditional pediatric (and adults when we consider MANTRA) eating disorders treatment flies in the face of developmental reality, current understanding of the neurological/biological correlates of the disease and healthcare norms for any other life-threatening illness.
Throughout human history, we have lived in communities of extended family networks. We cared for our loved ones though the birth of children and grandchildren, through grief and mourning, and through illness. It was not until the second half of the 20th century that families began to move away from each other and live separately due to changing economics. Paralleling this shift was a professional shift in thinking about family dynamics, which began to refer to families who lived and functioned more traditionally as enmeshed. This unfortunate paradigm identified parents as the cause of many psychiatric problems such as autism spectrum disorders, schizophrenia and eating disorders. Accordingly, parents were told that their children needed to be removed from their environment in order to recover. and the residential model of treatment was born. This model sees the behavior of the family of someone with a life-threatening eating disorder as the problem to be solved rather than as the consequence of the stress of this life-threatening disease. In any other life-threatening disease, the family is provided support, sympathy and understanding for the intense stress they live under. Family members are seen as heroes, and as courageous warriors who will do anything to save their loved one. It is tragic and iatrogenic that when it comes to eating disorders, parents and family members are not treated in this same way.
Given what we know about the neurological correlates of eating disorders, and the impact of malnourishment on the brain, it is actually cruel and ineffective to expect someone with an eating disorder to act alone in their recovery. It would be as if I asked and expected my brother with cerebral palsy to get out of his wheelchair and get me a glass of water and then consider him a failure when he could not.
In the case of an eating disorder, requiring the person to act alone actually mimics the voice of the eating disorder and perpetuates the illness. The altered brain functions of someone with an eating disorder are well documented at this point; and yet, clinicians and physicians continue to remove young people from their families’ care and tell parents to “stay out of their food” and “do not be the food police”. These professionals are tragically amplifying the voice of the eating disorder, resulting in family behaviors that accommodate the demands of a brain with an eating disorder.
It is inconceivable that physicians and clinicians who understand typical child/adolescent development, and would never allow a child or adolescent to make other healthcare decisions independently, would advocate for the exact opposite approach with an eating disorder. We know that adolescents can be oppositional. We know that teens can tantrum like young children. We known that the brains of young people are not fully developed and have difficulty anticipating consequences accurately. Therefore, parents set limits and endure arguments and outbursts in support of those limits. Yet, in the face of a young person with an eating disorder, all of that parental wisdom and resolve can wither, especially when a professional has undermined that very parent.
That is why my job is first and foremost to remind parents of their wisdom, their parenting skills and authority, and their understanding of their own child. As I said in my first sentence, my job is to empower parents to be my partner to heal their most beloved children.