The second article in a “patient and doctor” series on understanding eating disorders
Dr. Richard Kreipe’s recollection of treating Audry
After more than five years of treatment for restrictive anorexia nervosa in various inpatient and outpatient settings in which she was unable to achieve or maintain a minimal healthy body weight, Audry was branded as a “treatment failure”.
“Persistent anorexia nervosa” is now the preferred term for patients who find themselves mired in chronically low weight. Audry was fortunate to have a very capable adolescent medicine specialist, who, as the newest health care provider in a series of professionals trying to make her gain weight, recognized that things were not going well. This physician called me to request that I assume responsibility for Audry’s treatment.
When I asked this physician about Audry’s outpatient clinic visits with her, it became clear that each visit was focused almost exclusively on weight. Audry dreaded weigh-ins. Regardless of the readout on the scale, conversation was overshadowed by fear of having gained, or disappointment of not having gained, weight. Inevitably negative. One patient described the whole process of getting undressed, donning a clinical examination gown, waiting for the nurse to bring her to the weighing station and then stepping on the scale as: “going to the gallows.” Every clinic visit was like being executed. Grim…
It was clear to me that if I, as a health professional, were to help Audry I would need to shift the emphasis from numbers on the scale to a comprehensive assessment of her health. The only thing that I knew about Audry was that she was very sick and had a reputation for being resistant to treatment. Being designated by the New York State Department of Health as the Medical Director of the Western New York Comprehensive Care Center for Eating Disorders based in Rochester, I had a responsibility to do what I could to help Audry. And I am always up for a challenge. I just didn’t know that I would be able to make a difference in the course of Audry’s illness.
So, I agreed to work with her and started seeing her as an outpatient in September 2014. At first, things did NOT go well…at all. In fact, her parents were considering refinancing the family home to be able to afford sending Audry to the other side of America for residential treatment. Then, following the old saying, “if nothing changes, nothing changes”, I came to realize that Audry was really resistant to the emphasis on everything being defined by the scale. She was also very strong-willed and determined, but NOT determined to lose weight. She was determined to be able to run and compete in distance races.
So, I suggested that measuring Audry’s weight in clinic would not be necessary, as long as she would allow me to examine her physically at every visit. Weigh-ins clearly produced more anxiety than clinically useful information. Thus, the scale needed to be off-limits in our clinical interactions. Otherwise, it was, at best, a distraction. From my clinical experience, I knew that weigh-ins could be eliminated if I were able to personally assess Audry’s physiologic stability by:
1) measuring her body temperature and blood pressure;
2) examining her hands and feet to check their color, temperature and blood circulation;
3) listening with my stethoscope as she changed position from lying flat on her back, to sitting with her legs dangling over the examination table, and finally to standing upright for a few minutes to see how her heart responded to the effects of gravity in reducing blood flow to her brain; and
4) having a conversation with her to determine that her brain was able to track normally.
Having made progress in many facets of recovery, though still at a low weight, we started discussing her wanting to run track the following school year. It was something that she wanted to work toward, rather than something that she needed to earn by gaining weight. Audry felt healthy and her weight was checked periodically—with her in control of the process—and she steadily gained weight for the first time in treatment. Her weight did not become irrelevant, but it became easier for her to deal with weight gain because it was her choice and she was becoming a stronger athlete. Audry reported enjoying beating boys in races when she was younger, and she wanted to get back to running. However, running had previously been considered a “symptom” of her anorexia nervosa, pursued exclusively in the name of losing weight. Professionals forbade her to run until she demonstrated the ability to gain and maintain weight.
Recognizing running as potentially a symptom intended solely as a means of burning calories in the name of minimizing body weight as part of active anorexia nervosa, as well as potentially an incentive for recovery because it was an enjoyable sport in its own right, I chose to accept Audry’s position that being able to run would be a valuable reason to recover from anorexia nervosa. Our treatment focus relative to body weight had shifted from “gaining weight” to “feeding your brain to become healthier”. Audry’s physical signs and symptoms, not the scale, was the final arbiter of how she was doing.
With respect to exercise, the focus shifted from “you can’t exercise until you gain weight” to “you can start to exercise in very minimal ways, but if you are really serious about wanting to run competitively again, your caloric intake will need to increase dramatically from where it is now.”
In an interesting paradox, things were switched from “you have to eat to run” to “to run, you have to eat”. Turning treatment on its head like Audry and I agreed on, is not really paradoxical. In fact, it is in keeping with “self-determination theory” developed by social psychologists Ed Deci and Rich Ryan at the University of Rochester.
Self-determination theory (SDT) is based on extensive research showing that human interpersonal growth, social development and well-being are best facilitated by intrinsic motivation, related to three psychological aspirations common to all humans: competence, autonomy and relatedness. However, much behavioral treatment for restrictive anorexia nervosa with respect to weight gain seems guided by harm-avoidance. “If you don’t gain weight, then…” Thus, hospitalization, feedings by naso-gastric tubes, restriction from sports, and other elements of treatment are more punishment than therapeutic.
An important element of SDT with respect to a professional facilitating an individual patient changing behavior is “autonomy alignment”, in which the professional and the patient collaborate in working toward common goals. This process becomes challenging in the treatment of restrictive anorexia nervosa, because it can be difficult to distinguish between the voice of the eating disorder (directed toward maintaining illness) and the voice of a patient’s authentic autonomy (directed toward recovery from illness). What magnifies this challenge is the fact that within an individual, these voices often vary in intensity and influence depending on a number of different circumstances, even over the course of a day or an hour. Thus, autonomy alignment in a therapeutic relationship that has several potential sources of conflict must be constantly re-evaluated to assure the overall direction is toward recovery.
My relationship with Audry was based on my treatment approach aligning with her belief that being able to run again, both for enjoyment and eventually competitively, would be adequate incentive to gain weight and recover. The goal was not to gain weight. The goal was to become healthy enough to be able to run again. Eating adequately to feed her brain and her muscles, tendons, ligaments and bones was the means to that end, that goal.
Our relationship was based on my being able to monitor her progress toward—as well as possibly moving away from—her goal, based on her physical health, not numbers on a scale. As long as she was moving toward her goal, things were fine. When she seemed to be moving away from her goal, we would talk about what was interfering with working toward that goal, and address those deviations. The goal did not change, these were detours. Therefore, Audry was able to start running competitively in high school, enjoying the comradery and social interactions with teammates, the ability to focus on the details of running, working toward “personal bests” and other challenges to become better at her sport.
Although there had been times when even being able to graduate from high school had been a question, Audry was able to graduate at the top of her class as a varsity cross-country athlete, enroll at the University of Rochester with significant academic scholarship support, and join the cross-country team at the University of Rochester. As she approached her senior year at college, Audry came to realize that running competitively, for her, created an unhealthy environment with respect to eating habits. So, she decided to leave the team to avoid being drawn back into eating disorder patterns. However, she has found a local running club that provides her with the opportunity to enjoy many aspects of running that she has found rewarding for most of her life, without the risk of returning to disordered eating.
Audry now gives presentations about eating disorders on-campus during National Eating Disorders Awareness week, and she and I co-present about eating disorders at graduate student seminars at the Medical Center. Might she have recovered without a change in treatment approach? Of course!
It is possible for individuals to recover from anorexia nervosa without treatment, and sometimes despite ineffective treatment. However, I also believe that focusing on developmental issues related to her being an adolescent, her sense of self, that was being defined in terms of her body weight measured on the scale, and her sense of autonomy, that was being challenged by professionals who told her what she could and could not do, changed the treatment dynamics and facilitated her ability to be “self-determining”.
About Richard E. Kreipe, MD, FAAP, FSAHM, FAED
For 40 years, my academic and clinical activities have focused on adolescent medicine, informed by the biopsychosocial model, within the context of the processes of adolescence, and a developmental framework that emphasizes a youth’s personal strengths, assets, and positive qualities, rather than weaknesses, deficits, or problems. With respect to the evaluation and treatment of an adolescent or young adult affected by an eating disorder, rather than focusing on symptoms of mental illness, there is benefit in considering a youth’s personal experience of adolescence with respect to four transformations that can be directly linked to the development and maintenance of the condition: 1) girl-to-woman or boy-to-man for females and males, respectively (puberty); 2) child-to-adult (identity); 3) childhood-to-adulthood (autonomy); and 4) reactive-to-proactive behaviors and thinking as brain circuitry matures between 12 and 25 years of age (brain development).