What happens to people with eating disorders like anorexia or bulimia who don’t get treatment–or who don’t get enough of the right treatment?
This is an important question because, according to the National Association of Anorexia Nervosa and Associated Disorders, only ten percent of people with eating disorders are ever treated. It’s also a tough question, because data in this field is collected primarily from those who have been treated. So when I began writing my book Gaining: The Truth About Life After Eating Disorders, I decided to take a different approach.
I knew that most of those who struggled with eating disorders when I was growing up in the 1960s and ’70s did not get proper treatment. To a large extent, that was because doctors at that time did not recognize these illnesses. I, for example, received neither a diagnosis nor treatment; only years later did I realize that I’d been anorexic from eighth grade until my junior year of college. So were several of my high school and college classmates. Others struggled with bulimia. And the strange thing was that because we were constantly comparing ourselves to each other–what we weighed, how much we ate, how we kept the weight off, how we hid how much we’d lost–we knew exactly who had which of these then-unrecognized conditions. So 30 years later, when I decided to explore the long-term effects of eating disorders, I knew whom to ask.
What I learned from these interviews, and from reexamining my own life, was both comforting and sobering. Today, treatment for these illnesses is specialized and comprehensive, involving medical, nutritional and psychological therapies, but 40 years ago “treatment” often consisted of forced feedings and little else. The classmates I interviewed actually fared better than others who were hospitalized for anorexia back in those days, at least one of whom died not long after I graduated from high school.
But did the fact of our survival mean we’d fully recovered? If so, how did we recover? My interviews suggested that most of us owed our physical health in large measure to the love of friends, partners and family members who saw past the physical shape of our bodies and insisted on connecting with the person hiding inside. Not the person we were pretending to be or felt we should be, but the true self the eating disorder had eclipsed. Recovery was as much about restoring that true self and building healthy relationships as it was about rebuilding a healthy body, and the more we felt we were gaining full and meaningful lives the less of a stranglehold our obsession with food and weight had on our brains. Unfortunately, few of us back then were conscious of this process, much less intentional about maintaining it.
Decades later, many of us appeared objectively to be doing quite well, with good careers and seemingly stable marriages and families. But on closer inspection, I discovered that many were also struggling with what I now call the half-life of eating disorders. That is, we no longer necessarily binged, purged or restricted using food, but we binged, purged and restricted in other ways. Some used exercise, others sex, drugs, alcohol, work or religion. We still obsessed, still beat ourselves up emotionally, still engaged in compulsive behaviors. A few also cycled through periods of relapse into full-blown, and generally secretive, anorexic or bulimic behavior. This was especially likely to happen during periods of profound change or loss–when a divorce, say, or death of a loved one triggered the old self-defeating distress signals.
Those most vulnerable were those who were most socially isolated; one such classmate died of an anorexic relapse just last year, at age 57. Those doing the best seemed to be those of us who eventually had sought counseling and discovered the missing link between eating disorders and other patterns of thinking and behavior.
To better understand this missing link, I turned to the researchers now investigating the roles of genetics and personality in eating disorders. Their studies confirmed what I had observed when interviewing my former classmates: People with anorexia and bulimia tend to share certain innate temperamental traits. Those who’ve struggled with anorexia tend to be highly persistent, introspective and cautious. Those who develop bulimia are often impulsive by nature and drawn to novelty. Perfectionism is common in people with all eating disorders. These traits precede the eating disorders, and they do not go away when you recover.
There is nothing inherently positive or negative about these traits. If recognized and steered in a positive direction, each can contribute to a fuller richer life. Perfectionism and persistence, for instance, can be a boon if you’re an artist, architect or scientist, so long as you don’t confuse the quality of your work with your value as a human being. But if misdirected, persistence can cause you to overwork yourself, and perfectionism can cause you to fixate on meaningless or irrational ideals, such as extreme thinness or starvation, and then conflate them with identity.
Full recovery requires profound and honest self-examination, as well as a mindful approach to managing and directing your basic instincts. As psychiatrist and eating disorder specialist Joel Yager said to me, “Know thyself. … What is your biology? What is your calling? Study your temperament. Be respectful of it.”
Can you do this on your own? Theoretically, yes. But in reality, most of us need the help of an experienced professional who understands the true nature and complexity of eating disorders. Recent studies have shown that the earlier treatment for an eating disorder begins, the better the prognosis and the faster the rate of recovery.
The results can be breath-taking, as I learned from one young woman, just a year out of treatment, who recently wrote to me:
Before starting recovery, I was afraid to go anywhere with people, especially anywhere there’d be food. Since beginning recovery, I’ve discovered that I’m a people person! Who knew? Also I found out I have a true passion for the outdoors. Rock climbing, rappelling, hiking, all of it. I thought I was supposed to be a dud. But that’s not true. I’m supposed to enjoy living.
Note to everyone who’s ever had an eating disorder: we are all supposed to enjoy living.
Fortunately, most eating disorder treatment programs today understand this. They move well beyond the initial and necessary focus on eating and weight to address temperament, identity, self direction and other key predisposing or contributing issues. Qualified professionals in your area can be found through the Academy for Eating Disorders. I wish this help had been available when my classmates and I began our struggle to recover. If it had, we wouldn’t have spent so many years caught in our eating disorders’ half-lives.
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