Living with Eating Disorders
Western Mass Women Magazine
By Lucie K. Lewis, EdD, Senior Staff Writer
The nation was shocked by the sudden death of Karen Carpenter in February 1983. She was 32 years young, beautiful and talented with such promise, but she also had a painful secret that ultimately stole her life. Karen had an eating disorder – anorexia nervosa: words not previously spoken aloud in our public discourse. Karen had battled anorexia nervosa for nearly ten years before she succumbed to the devastating damage the disease had caused to her heart. Karen’s death brought the issue of eating disorders into our national consciousness and began a dialogue about the causes and treatments of the disease. But just as Karen suffered in secret, untold numbers of other women and men continue to battle this condition behind a shroud of shame.
Eating disorders are a group of conditions that cause serious disruption to every day diet ranging from severe under-eating to serious over-eating, according to the National Institute of Mental Health (NIMH). Jennifer Smith, Director of Walden Behavioral Care in Northampton identified three categories of eating disorders: anorexia nervosa, bulimia and eating disorders not otherwise specified (EDNOS). The NIMH delineated a category called binge-eating, which is the largest, most commonly diagnosed sub-category of EDNOS conditions. The NIMH defined characteristics of each condition through both observable behaviors and physical manifestation.
Anorexia is characterized by behaviors such as an unwillingness to maintain a healthy weight, denial of the seriousness of low body weight and extremely restricted eating. Anorexia results in extreme thinness (emaciation). Some of the physical symptoms of anorexia include thinning of the bones, mild anemia, muscle wasting and weakness, damage to the structure and function of the heart, brain damage and multi-organ failure.
Bulimia is characterized by episodes of uncontrolled binge-eating that are followed by compensatory behaviors such as forced vomiting, excessive use of laxatives or diuretics, fasting, excessive exercise or some combination of these behaviors. Physical symptoms include chronically inflamed or sore throat, gastrointestinal problems, severe dehydration or electrolyte imbalance that can lead to a heart attack.
Jennifer explained that EDNOS classified conditions include behaviors that approximate or hop-scotch those affiliated with anorexia or bulimia including conditions where behavioral evidence of both anorexia and bulimia is present. For example, binge-eating resembles bulimia because of periods of binging; however, these periods are not followed by the excessive compensatory behaviors common to bulimia.
Recognizing when a healthy concern for and management of weight has become something far more serious is essential. Jennifer explained that when disordered eating (skipping a meal, forgetting to eat or over-indulging – something that we all experience occasionally) crosses the line into focused mental and emotional energy on food, weight and shape, it is possible that more is happening and it may be time to seek help.
Eating disorders are complex conditions that often present with other conditions such as depression or post-traumatic stress. Patients may also present with chemical dependency or alcohol abuse, have obsessive-compulsive disorders or practice self-harming behavior such as cutting or burring themselves.
According to Jennifer, eating disorders emerge at times of significant transition. Onset most frequently occurs during early-to-late adolescence as teens struggle with the issues involved with their emerging identity and sexuality, and college students cope with the transition from a parent-supervised dependant life to a largely independent unsupervised one. In fact, eating disorders are far more prevalent on college campuses than in the populations as a whole with 20 percent of college students suffering from the disorder compared to 4 percent of the general population.
Jennifer stated that although people must choose to recover, they do not choose to develop an eating disorder. Eating disorders are a true mental illness that arises as a coping mechanism for dealing with major life stressors. Additionally, while times of transition mark the onset of eating disorders, depression, anxiety, low self-esteem, prior trauma or genetics establish a predisposition to developing eating disorders.
Numerous treatment approaches exit; however, no one treatment is effective for all patients. According to Stuart Koman, Ph.D., President and CEO of Walden Behavioral Care, a best practices approach developed by Kenneth Minkoff, M.D. has been used since 1998. This Comprehensive Continuous Integrated System of Care (CCISC) model incorporates foundational philosophies, practices and principles. In A ‘Continuum of Care’ Approach to Eating Disorders, Dr. Koman describes seven principles that include the expectation that co-morbidities are likely to exist; the understanding that successful treatment is based on empathetic, hopeful, integrated and continuing relationships and the knowledge that treatment must be individualized. According to Dr. Koman, the CCISC model also purports that there must be a system of care that makes efficient use of existing resources, integrates best practice for the treatment of each of a patients disorders, and is based on valid research incorporated into an integrated philosophy. Treatment must be offered based on individual needs which may include repeating previous therapies as symptoms return.
Walden Behavioral Care offers a continuum of care based on a “whole health” approach consistent with Dr. Minkoff’s model. According to Dr. Koman, their holistic system approach recognizes that the treatment of eating disorders requires an integrated approach that includes concurrent medical, nutritional and psychiatric treatment. Their care assumes the presence of co-morbidities “until their absence can be demonstrated” and offers a combination of therapies including group therapy, family therapy, individual counseling, dialectic behavioral therapy, cognitive behavioral therapy and other methods of treatment. Walden Behavioral Care are to restore nutrition, develop normal eating patterns and supplant negative coping strategies with healthy coping strategies that allow patients to manage stress and satisfy their needs.
The NIMH reported that researchers continue to study these disorders using new technologies such as magnetic resonance imaging to examine the brain activity patterns to gain a better understanding of the causes as well as potential new therapies and treatments.
During the same years that Karen Carpenter was fighting to gain control of her life, Martha Thompson, author of The Oxygen Mask Rule: How My Battle with Anorexia Nervosa Taught Me How to Survive, was also struggling with the onset of anorexia nervosa. Now 50 years old, Martha reported that she has wrestled with the disease for 39 years; however, she has enjoyed many functional years within that time. During her periods of recovery, she was able to lead an adventurous life even though the anorexia was tugging at her heels.
Initially, she learned to redirect her energy into a passion for acting. In her mid-thirties, the delicate balance between anorexia and the theater collapsed after the death of her father and stress forced her to retire from theater. In her forties, the anorexic patterns returned and she realized that the disease was destroying her body. She also realized that she had to learn to help herself first by applying the oxygen mask rule of flying because she did not know how to do that.
Martha explained that, for her, anorexia was less about her body image. She just wanted to be dead. She wanted to destroy her body because she did not feel worthy. According to Jennifer, there is often an overlap in the struggle with physical appearance issues and self-esteem issues for persons struggling with anorexia because those who feel badly about how they look also feel badly about themselves. The goal of treatment is to help them value themselves for who they are.
As many do, Martha struggled with periods of anorexic behaviors and bulimic behaviors. Martha explained that during her anorexic periods she was more shut down and wanted to disappear, but during her more bulimic periods she was full of life. She described her behavior during these times as more manic and self-destructive. Her appetites for all aspects of life were veracious, and it was during these times that she also struggled with alcohol abuse. Both were lived out in secret.
Jennifer affirmed that eating disorders are diseases of secrecy and isolation. According to Jennifer, the longer a person struggles with eating disorders the more the pieces of their life fall away including family, friends and other support-system relationships. Another goal of treatment is to rebuild these connections and support systems.
Martha has found that service to others has been an important element of her recovery. She loves animals and the work of her second career at the Los Angeles Zoo and Botanical Gardens has helped her learn to nurture others and herself. She now has a service dog named Henry. She says that Henry contributes to her ability to function and go to work daily.
Martha has shared her story because most of the books that are written to help others cope with their eating disorder seemed to be written for younger women. As an older woman, she wanted to share her experience to help those her age that also struggle with eating disorders. Jennifer explained that as patients work through the recovery process they dis-cover that the internal experience of the disease is the same across age and gender.