People die from anorexia nervosa.
This is true of other psychiatric syndromes, but with anorexia, the cause of death couldn’t be more straightforward. People with anorexia literally expire from the complications of malnutrition.
They starve and they die.
Your heart cannot beat if you don’t feed it. Your immune system can’t protect you without food. Your bones crumble, your kidneys fail, your liver sputters and your brain wanders, all as a result of inadequate food.
Anorexia Treatment Barriers
Suicide is common. Without proper nutrition, depression is prominent and thinking is blurred. Coping mechanisms falter. Life can seem unlivable.
So, here’s the really strange thing about anorexia: Despite its awfulness and potentially fatal outcomes, despite a death rate more than 12 times higher than any other psychiatric syndrome, insurers still balk at providing adequate coverage.
Can you imagine an insurer refusing to pay equally for the medically necessary care of any other disease with such clear risks?
In 2008, the Federal Mental Health Parity and Addiction Equity Act put special restrictions on the coverage of the treatment of eating disorders. While the explanations for this exception vary — some have suggested that this is because eating disorders are thought to lack a biological basis — it is clear that getting standard of care treatment for anorexia remains problematic even to this day.
In 2010, the U.S. Court of Appeals for the 9th Circuit found itself facing what was essentially a logic problem. The case of Harwick versus Blue Shield of California noted that while the insurer agreed that the residential treatment requested for a patient with anorexia was medically necessary — thus making it in compliance with existing parity statutes — coverage for residential treatment was not authorized because residential treatment was not part of the health plan. The court ruled in favor of the patient in this case, but the fact that this even ended up in court is shameful. Can you imagine an insurer refusing to pay equally for the medically necessary care of any other disease with such clear risks?
One Woman’s Story
So, while patients, their families and physicians continue to fight for coverage, we know that treatment for this disorder can be lifesaving.
In this context, here’s the story of a young woman who recovered.
Nicole (who asked that her last name not be used) is a remarkable 16-year-old. She is academically and socially accomplished and she speaks with wisdom that belies her age. She also faced anorexia nervosa head on and discusses her struggles with humility and insight.
What we can learn from her story?
To begin with, we can acknowledge that her bout with anorexia has not been easy. She suffered significant depression and even suicidal ideation as she muscled through the course of the illness. This aspect of her history is perhaps the most important take-home message. The work towards recovery from an eating disorder is never straightforward. Each patient finds a unique way to work with his or her treatment team and family to progress towards health. We can also note that Anorexia is a typically insidious and largely unconscious development. As you can hear from Nicole, the syndrome essentially snuck up on her and her family.
The Concern for Approval
Still, Nicole is not unlike many girls who develop anorexia nervosa. Her temperament is typical — perfectionistic, compulsive, obsessive and competitive. Combine that temperament, then, with her love of dance, and you can begin to appreciate the “perfect storm” that often characterizes this disease.
Ballet dancers have little room for error. Perhaps the worst error a ballet dancer can make is to become too heavy. Nicole’s desire to be the very best dancer combined with the sometimes unreachable weight standards in ballet contributed to her insidious slide down the eating disorder path.
Children and adolescents who develop disordered eating are extraordinarily sensitive to relationships.
Now, add to this perhaps the most important psychological quality that can predispose to an eating disorder. Children and adolescents who develop disordered eating are extraordinarily sensitive to relationships. They also couple this sensitivity with a deep concern about letting others down. Nicole’s concern for approval from those she loves the most — parents, teachers and coaches – leave her with perpetual and painful feelings of disappointing others and herself. So, she becomes particularly adept at losing weight, and she takes pride in her ability to do so. At the same time, she continues to “let down” her friends and family and her self esteem falls. Now, however, she has a new source of self-esteem. She can withstand hunger and lose weight. She replaces her former accomplishments with the sole accomplishment of weight loss.
This is where anorexia becomes particularly scary.
Abandoning Hope Altogether
As Nicole progressively drops more and more weight, her friends, family and doctors become concerned. In response, Nicole becomes angry and frustrated. She feels that no one understands, not even her parents, and certainly not her therapists.
This state of affairs cannot continue. Eventually, Nicole finds it impossible to keep up in dance, school or with friends. She thinks most poignantly and more often about food and body image, and she is therefore increasingly obsessed with becoming more and more thin. As Nicole can tell you now, her condition caused her to lose touch with the fun of being a teenager.
Eventually she suffered an injury while dancing that required surgery. This final blow caused her to abandon hope altogether. She felt she was entirely alone. No one would or could understand her.
Ultimately, it was this despair that led to her suicide attempt.
A Doctor’s Critical Role
So what made the difference? What cracked the denial? What allowed Nicole to overcome the inability to work toward recovery?
Nicole is adamant about what made the difference. It was her critically importance relationship with Emily K. Gray, MD, director of the Massachusetts General Hospital Teen Mentor Program at the Eating Disorders Clinical and Research Program, and a staff psychiatrist at Massachusetts General Hospital. Dr. Gray, her psychiatrist and therapist, saved her life. For Nicole, facing utter desperation, feeling that her parents had given up, and overwhelmed by guilt, she found in Dr. Gray someone she could trust, someone who would listen and understand.
With the foundation of this therapeutic relationship, Nicole had the support and courage to begin to see the patterns in her life that brought her to the brink. She could focus more clearly on her fears and obstacles as well as her strengths. And, most importantly, she felt capable of taking on the necessary challenges, starting with learning to advocate for herself.
Effort, Time and Support
Nicole had a serious bout with a serious medical condition and was lucky enough to encounter a talented and gifted physician who was able to help her to recover.
Naturally quiet and fearful of self-revelation, Nicole nevertheless enrolled in a public speaking class. She changed schools. She shared her needs with her family and friends and was able to accept their care and support. And she learned, often painfully, that her perfectionism was making her sick. Through her work with Dr. Gray, Nicole found strength in the accomplishments that made her happy and healthy.
Nicole had a serious bout with a serious medical condition and was lucky enough to encounter a talented and gifted physician who was able to help her to recover. Nicole had a very good health insurance plan that was willing to cover her care, but not her visit to a nutritionist. She therefore paid for the nutritionist out of pocket. (Contrast this to a person with diabetes: in that case, a nutritionist is also considered medically necessary, but is always always covered.)
People with anorexia nervosa do in fact get better. But it takes effort, time, and support.
Dr. Gene Beresin is executive director of The MGH Clay Center for Young Healthy Minds and professor of psychiatry at Harvard Medical School. Dr. Steve Schlozman is a contributor to The MGH Clay Center and an assistant professor of psychiatry at Harvard Medical School. They wish to thank Nicole for her willingness to share her personal story and both Nicole and Dr. Emily Gray for their editorial input.
This article first appeared on WBUR’s CommonHealth blog.