She could be your neighbor, your sister or your best friend. On the surface, it seems that she has it all -- academically gifted, loved by her family and friends, and driven. But behind the scenes, she has been hiding a dark secret. She's slowly beginning to waste away and literally putting her life on the line.
In the United States, according to the National Eating Disorders Association, between five and 10 million girls and women and one million boys and men struggle with eating disorders. And eating disorders have the unfortunate distinction of having the highest death rate of any mental illness -- nearly 10 percent will die as a result of their eating disorder.
Of all eating disorders, Anorexia Nervosa is the most rare, affecting approximately 3 percent of all individuals struggling with eating disorders. The illness often has devastating effects on patients and their families. Many patients experience cardiac complications, hair loss, bone deterioration including osteoporosis, and loss of their periods.
Historically, Anorexia has been treated in inpatient and residential treatment facilities requiring patients to live away from their families for many weeks or months per treatment episode. Fifteen years ago, families were often vilified and blamed for causing their son or daughter's illness. Treatment involved separating patients from their families because treatment providers believed that the parents had "failed" -- that not only were the parents incapable of helping, but that they actually caused more harm.
For many families, this separation caused significant distress and disruption. And although treatment in inpatient or residential facilities is usually successful in restoring the patient's weight, the rate of relapse once patients leave and return home is high often requiring multiple treatment episodes. Often, families were unprepared for how to continue to support their son or daughter once they were back in the "real world."
The Changing Face of Treatment
Researchers have now found that for some patients suffering from anorexia the involvement of the families in the treatment process contributes to better outcomes (1), (2), (3). In addition, this treatment can often be done in an outpatient setting eliminating the need for patients to leave their families and live outside of the home.
Family Based Treatment, also known as the Maudsley Approach, is a specific type of treatment for anorexia for adolescents between ages 13 and 17 years. This approach utilizes the parents and family as active participants in the restoration of the patients' weight and physical health (1). It also aims at preventing hospitalization of patients and assisting parents in restoring their child's weight and returning him or her to normal adolescent development with no continuing eating disorder behaviors.
Outcome studies for Family Based Treatment have shown that for patients who have had anorexia for less than three years, approximately two thirds of adolescent patients are restored to a healthy weight. Impressively, five years later some 75 to 90 percent remain fully weight recovered (2). Research has also shown that most patients participating in a Family Based Treatment require on average no more than 20 treatment sessions over the course of six to 12 months (3).
What Families and Patients Can Expect
So often, patients and families have been told that "it's not about the food." In essence, there is still much truth to this statement. The simplest way to conceptualize an eating disorder is to think of it like a puzzle that has five pieces:
1. Genetics: Most individuals struggling with eating disorders have a family of anxiety and/or depression. In some studies, upwards of 70 percent of individuals with anorexia were identified as having an undiagnosed anxiety disorder dating from early childhood. The most common forms of anxiety were obsessive-compulsive disorder (or strong traits of OCD), social anxiety and social phobia.
2. Personality Traits: In the past five years, researchers in the field of eating disorders have begun to focus in on this underlying puzzle piece. Typical traits include people-pleasing, perfectionism, being highly driven, and harm or conflict avoidance. Often individuals and their families will note that their son or daughter had an extremely difficult time with change, conflict or making mistakes.
3. Trauma or Loss: This is often a misunderstood piece of the puzzle. Individuals with eating disorders usually have some degree of trauma or loss in their histories, but it can range from being picked on in school to severe emotional or sexual abuse. Not everyone experiences abuse, but because patients with eating disorders are often more sensitive and intuitive, the impact of these types of events resonates that much stronger for them.
4. Family Dynamics: As noted above, families used to be viewed as the cause of an eating disorder. At one time, emotionally-distant fathers were to blame. Next, overly controlling mothers. Fortunately, we now know that while sometimes these dynamics are present, what's most important to understand is how the patient viewed his or her role in the family (i.e., to be the "good kid").
5. Culture: Our culture does not cause eating disorders, but it certainly creates an unhealthy environment where they are allowed to flourish. Unrealistic expectations about weight and appearance coupled with unhealthy views about food and dieting can help put the other four puzzle pieces in place. Cultural dynamics are sometimes the last piece to click all the other pieces into place.
Through the ongoing, promising research about Family Based Treatment, parents can expect to be an integral part of the treatment and relapse prevention process. Patients can anticipate that their support system will not only receive the appropriate education about eating disorders, but practical, hands-on experience that will help bolster their chances of full recovery.
(1) Loeb, K., Le Grange, D, 2009. Family based treatment for adolescent eating disorders: Current status, new applications and future directions. International Journal of Adolescent Health, 2, 243-254.
(2) Eisler, I., Dare, C., Russell, G. F. M., Szmukler, G. I., Le Grange, D., and E. Dodge. 1997. Family and individual therapy in anorexia nervosa: A five-year follow-up. Archives of General Psychiatry, 54, 1025-1030.
(3) Le Grange, D., Binford, R., and K.L. Loeb. 2005. Manualized family-based treatment for anorexia nervosa: A case series. Journal of the American Academy of Child and Adolescent Psychiatry, 44, 41-46.; Lock, J., Agras, W.S., Bryson, S., and H. Kraemer. 2005. A comparison of short- and long-term family therapy for adolescent anorexia nervosa. Journal of the American Academy of Child and Adolescent Psychiatry, 44, 632-639.