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Everything I Need to Know I Learned From Adolescents

A 31-year-old woman named Monica recently died from anorexia nervosa (AN) following a 15-year battle with the disease. Her death is an eerie reminder of what we already know: eating disorders are dangerous, deadly, and difficult to treat. Traditional treatment for AN typically takes 5-7 years. Less than half of patients with AN will ever fully recover, and of those who do recover, one-third will relapse. Nearly 20% of patients with AN will die as a result of their illness.

Just a decade ago, only 30% of patients fully recovered, and now nearly 50% will fully recover. The reasons for the improved prognosis include greater awareness about eating disorders, which leads to earlier diagnosis and treatment, and the advent of more effective, evidence-based treatment for adolescent AN, such as Maudsley Family-Based Treatment. But early diagnosis, early intervention, and the Maudsley method primarily benefit adolescents. Consequently, I would presume that the 20% increase in recovery rates over the past decade is primarily due to the recovery of more adolescents, not the recovery of more chronically-ill adults.

Although AN typically begins in early adolescence, those who die from the disease are more often adults who have battled it for many years. The most effective course of action is early diagnosis and aggressive, evidence-based treatment as soon as symptoms appear. Unfortunately, there are countless adults with AN who have struggled for years or even decades. As of this time, there are no evidence-based treatments for adults with AN, nor are there any medications which have been proven to benefit adults with AN. CBT has been shown to be moderately beneficial in preventing relapse in weight-restored AN patients but shows no benefit in underweight anorexics.

A lot of the AN treatment offered today is outdated and ineffective. Fortunately, however, there are more and more clinicians and treatment centers who are adopting modern, evidence-based approaches to treating adolescent AN that have much higher success rates. For example, the Kartini Clinic, the UCSD 5-Day Intensive Family Program, and the Children’s Hospital at the University of Chicago have adopted a highly-practical family-based, evidence-based approach to treating adolescent AN based on the Maudsley Method.

We can learn a lot from the success of these adolescent programs. I believe that we can use the basic principles of Maudsley FBT and the philosophy of these adolescent treatment programs to develop effective treatments for adults. Medicine, psychology, and psychiatry do this all the time in the reverse; that is, they extend effective adult treatments to adolescents. If a particular medication or psychotherapy approach demonstrates effectiveness in adults, clinicians automatically begin using it in adolescents, often without any research data to support its use in this population. Clinical trials are then conducted on adolescents, and research data follows.

Consider the basic principles of Maudsley FBT:
1. Conceptualization of AN as a biologically-based brain disorder of unknown origin
2. Externalizing the illness
3. Viewing family members as vital resources in a patient’s recovery
4. Recognition that most of the symptoms of AN are direct result of malnutrition and thus will abate after weight restoration
5. Focus on nutritional rehabilitation and weight restoration as non-negotiable first priorities in treatment
6. Acknowledgment that patients with AN are unable, in the acute phase of illness, to make healthy decisions regarding food and weight
7. Coaching parents to provide emotional and nutritional support to their child
8. Addressing psychological symptoms and other comorbid disorders after weight restoration

Which of these principles are irrelevant in the treatment of adults?

I see no logical reason why we cannot use Maudsley FBT in the treatment of adults with AN. Based on the patient’s circumstance and living situation, spouses, roommates, friends, or significant others may be enlisted for meal support in lieu of parents. The specific details may need to be tweaked in order to be relevant to an adult patient’s situation, but the general principles would remain the same. After all, the physical and psychological symptoms of AN are the same regardless of whether the patient is an adolescent or an adult. AN stunts growth and development and prevent sufferers from becoming independent, fully-functional beings. Thus, adults with AN are regressed physically, sexually, and socially to the point that they often resemble adolescents anyway.

The differences that do exist between adolescent and adult forms of AN are not inherent to the disease itself or even to the age of the patient. Rather, they are imposed by society. We, as a society, have arbitrarily determined that teenagers are fully responsible for their own healthcare decisions once they reach their 18th birthday. This is the case regardless of whether the patient has an ego-syntonic, anosognosic condition such as AN which impairs their judgment and insight. By virtue of their illness, adults with AN are unable to make healthy decisions for themselves. And yet, the law prohibits parental involvement, even parental notification of treatment, unless the patient signs a release. The law clearly sides with AN, not with the patient.

Family support and family involvement are powerful predictors of good outcome. Unfortunately, most therapists consider parental involvement in an adult patient’s treatment unnecessary or even detrimental. These therapists believe that the etiology of AN is rooted in controlling parents, separation anxiety, and issues related to independence and autonomy. Thus, they keep patients separated from the very people who love them most and who may be best equipped to help them achieve full recovery. This is counterproductive because a patient’s physical and psychological wellbeing must always take precedence over the developmental issues of emerging adults which, incidentally, have never been proven to be causally related to AN. Adult patients’ lives are threatened as a result of ignorant adherence to an unproven theory.

I firmly believe that Maudsley Family-Based Treatment can be effective in young adults. In fact, I have used this approach with young adults in my practice with great success. I have seen patients who have been sick for a decade, hospitalized multiple times, and endured several courses of ineffective residential treatment finally achieve recovery as outpatients through FBT. I look forward to the day when FBT is widely available to adults, as well as adolescents, with AN.

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In Defense of Helicopter Parenting

Last month, Time Magazine ran an article about the dangers of over-involved, over-protective parenting (otherwise known as “helicopter parenting” because these parents tend to hover over their children). The article is well-researched, well-written, and very interesting. As a therapist who frequently encounters this phenomenon in the parents of my adolescent and young adult patients, and as a product of this type of parenting myself, I have a few thoughts and observations on the issue.

I agree wholeheartedly with the author that today’s parents are far too over-involved and over-protective, and this is particularly true amongst middle- to upper-class families with well-educated parents. According to psychologist Eric Ericson, the primary developmental task of middle adulthood (ages 30-50) is seeking satisfaction through productivity in career, family, and civic interests. This is precisely the age at which adults are parenting young children and adolescents, and for helicopter parents, their striving for productivity is channeled into their children. Parents’ intentions are good, but the outcome can be problematic. You see, the middle adulthood psychosocial task of productivity stands in diametric opposition to the adolescent developmental task of identity formation. Children need to play, explore, relax, and interact with their surroundings in creative, imaginative ways. Adolescents need to loaf, “hang out,” date, experience “teen angst,” spend quality time with family and friends, develop their social skills, make their own choices (within reason), make mistakes, and learn from them.

Ideally, a healthy person will emerge from adolescence with a solid self-identity, resilience, confidence, good problem-solving skills, and the ability to tolerate discomfort and failure. Having worked in several college counseling centers, I can attest that many kids arrive at college without these skills and attributes. Their lives have been geared entirely towards achievement in academics, arts, and athletics, often not for the love of science or music or soccer, but because their parents pushed them and/or because they believed it would improve their chances of gaining admission to a prestigious college. Quite often, they don’t know how to structure their time, study properly, deal with disappointment, or make decisions independently. Sadly, many of them do not know who they are or what they enjoy.

Helicopter parenting has the potential to be quite harmful to children by increasing their stress and anxiety and preventing them from developing self-confidence, resourcefulness, problem-solving skills, distress tolerance skills, emotion regulation skills, and creativity. Children and adolescents are over-scheduled, over-worked, and pushed to succeed, often at the expense of their emotional health. There is not enough unstructured time for kids to play, explore, or create. There is little room for adolescent identity formation in between AP classes, Princeton Review SAT prep courses, college applications, three varsity sports, band practice, clubs, and mandatory community service hours.

These issues notwithstanding, one problem I have seen far too often in my profession is the tendency for therapists to blame helicopter parents for causing their child’s eating disorder. It is easy to look at over-involved parents and an adolescent’s misguided search for control and identity through self-starvation and conclude that the former caused the latter. But the belief that over-involved, controlling, or enmeshed parents cause children to develop anorexia nervosa (AN) or bulimia nervosa (BN) lacks solid scientific evidence. What’s worse, this belief has the potential to undermine treatment, disempower parents, confuse children, perpetuate deadly symptoms, erode physical and mental health, destroy families, and turn an acute illness into a chronic and disabling one.

There is a correlation between over-involved, over-protective parenting and the development of AN, but correlation does not necessarily indicate causation. If variable A (helicopter parenting) and variable B (child’s development of AN) are correlated, there are several possible explanations for the relationship between these two variables:

1.) A causes B
2.) B causes A
3.) Variable C causes both A and B
4.) Variables D, E, F, G, H, I, J, K, L, M, and N work together in complex ways to influence the development of both A and B.

Let’s examine each possible explanation.

1.) Explanation 1: Helicopter parenting causes children to develop AN. There is no reliable scientific evidence to support this explanation. Ironically, this explanation is touted far more frequently than the others, even by clinicians who specialize in treating eating disorders.
2.) Explanation 2: A child’s AN causes parents to become over-involved or over-protective. There is some evidence to support this explanation. If parents were not anxious, cautious, protective, or hovering before their child developed AN, you’d better believe they will be once their child becomes ill. This phenomenon is not unique to AN. Parents of children with any illness or medical condition naturally worry about their child and do whatever they can to protect her.
3.) Explanation 3: A third variable causes both helicopter parenting and AN in children. There is a wealth of evidence to support the genetic transmission of AN as well as related personality traits. The personality traits that predispose people to developing AN – anxiety, obsessiveness, perfectionism, and harm-avoidance – are largely genetic. In an adolescent female, these traits are likely to manifest as an eating disorder. In a middle-aged, middle-class, intelligent, well-educated parent, these traits are likely to manifest as over-involvement, over-protection, and over-investment in their child.
4.) Explanation 4: A complex interaction of other variables work together to produce both helicopter parenting and AN in children. This is the most thorough, and probably the most accurate explanation. As stated in explanation #3, genetics plays a major role in the development of AN. A wealth of environmental variables are also believed to influence the development of parenting style as well as AN (e.g., level of education, income, culture, peer group, family background, exposure to stressful life events).

I love working with adolescent children of helicopter parents. I require parents to be fully informed and actively involved in their child’s treatment, and helicopter parents slide seamlessly into this role. They are excellent candidates for Maudsley Family-Based Treatment because their anxiety level is high enough to propel them towards action, they thoroughly educate themselves on their child’s condition, they seek out the best treatment and resources, they are vigilant and persistent, they maintain a very high level of involvement and supervision, and they are tremendously invested in their child’s recovery. Misguided, ill-informed, old-school therapists argue that these characteristics caused the child’s AN, and they advise parents to “back off” and allow the child to make her own choices about food and weight and treatment. This approach rarely leads to lasting recovery.

While helicopter parenting certainly has the potential to cause harm, it can also be used to the child’s advantage in recovery if channeled properly. Helicopter parents tend to be wildly successful in Maudsley Phase I (re-feeding / weight restoration), and largely successful in Phase II (helping the adolescent eat properly on her own). Some of these parents are eager to step back in Phase III as their child deals with psychological and social issues and develops a healthy adolescent identity. Other parents struggle to let go when the time comes. With proper guidance from a good therapist, however, most helicopter parents can learn to manage their own anxiety enough to allow their children to blossom and develop as healthy, independent young adults. This does not come naturally for them, but never underestimate the power of the helicopter parent. If the therapist who helped save their beloved child from a life threatening illness coaches them to step back and let go, they’ll do it.

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Eating Disorders: Prevention and Early Intervention Tips for Parents

There is a fair amount of internet advice for parents on how to prevent eating disorders in their children. The majority of this advice centers around teaching children about healthy eating habits, moderate exercise, positive body image, and media literacy. This is great advice for parents to follow, but it does not prevent eating disorders. It may help to prevent body dissatisfaction and dieting, but these things are not the same as an eating disorder.

Ironically, many children and adolescents who are in treatment for anorexia nervosa or bulimia nervosa report that their illness was triggered by a health or nutrition class at school, training for a sport, or a general desire to adopt the much-touted principles of “healthy eating and exercise.” Unfortunately, most of the information children receive on the benefits of “healthy eating and exercise” is really our fat-phobic society’s disguised attempt to shield our precious children from this horrible “obesity epidemic.” To make matters worse, this information is delivered to children by teachers, physicians, coaches, and parents – supposedly knowledgeable authority figures whose job is to educate, protect, and nurture them. Children who are predisposed to eating disorders are usually compliant, rule-bound, anxious, obsessive, perfectionistic, driven, and eager to please. They are virtual sponges who soak up this “healthy eating and exercise” information and follow it to the letter. The obesity hysteria terrifies them, and their obsessive, perfectionistic temperament makes them stellar dieters. This is the perfect storm for the development of an eating disorder.

I do not believe we should stop educating children about nutrition and exercise out of fear that they will develop eating disorders, much as I don’t believe we should stop educating adolescents about safe sex and contraception out of fear that they will become sexually active. More information is usually better than less, as long as the information is accurate, useful, and effective. The middle school and high school syllabi on sex education provide information which is accurate, useful, and effective (whether kids act on that information is another story). The information kids receive on “healthy eating and exercise” has not succeeded in improving their overall health, preventing eating disorders, or combating this alleged “obesity epidemic.”

I believe that, in terms of nutrition, kids should be taught about what to embrace rather than what to avoid. They should learn the importance of eating lots of fruit, vegetables, dairy products, protein, fat, and grains, and drinking plenty of water. They should be taught to enjoy their favorite snacks and deserts as well. They should not be taught about calories or the evils of sugar and fat; they should not be advised to avoid any foods, they should not learn to label foods as “good” or “bad,” and they should not be taught about the dangers of obesity or the virtue of thinness. Most importantly, I believe children should be taught about the dangers of dieting, much as they are taught about the dangers of drugs, alcohol, and unprotected sex. The dangers of dieting are grossly underrated.

Even if nutrition education is accurate, useful, and effective, it will not prevent eating disorders. That being said, what steps can parents take to prevent their children from developing eating disorders? In my opinion, it all boils down to three basic principles: 1.) accurate information, 2.) vigilance, and 3.) immediate, aggressive, effective intervention.

Accurate information
The pop-psychology literature will have you believe that if you have a healthy body image yourself, encourage healthy body image in your children, nurture positive self-esteem, and preach the importance of healthy eating habits and exercise, your child will not develop an eating disorder. This assumption is simply untrue. Parents need to know that seemingly healthy, well-adjusted children with positive body images and excellent parents develop eating disorders all the time. Good parenting does not make your child immune. It can, however, improve your child’s chances of full recovery.

If your child develops an eating disorder, let go of guilt, shame, and self-blame. While it is natural for parents to blame themselves, guilt is a hindrance to effective action. Of course you have made mistakes in parenting – everyone has! You may be an imperfect parent, but this does not mean you caused your child’s illness. Despite what you may have heard in the media, there is no reliable scientific evidence to suggest that parents cause eating disorders. If your child’s pediatrician, dietician, or therapist suggests that the eating disorder is your fault, this is an indication that he or she is not aware of recent research on the etiology of eating disorders and effective treatments. Get a second opinion. Anorexia nervosa and bulimia nervosa are biologically-based brain disorders, just like autism and schizophrenia. Although you are not to blame for causing your child’s eating disorder, it is your responsibility as a parent to ensure that she gets proper treatment. This responsibility includes protecting your child from outdated, ineffective treatments, which can often do more harm than good.

Parents also need to know that eating disorders are not limited to rich, white teenage girls. This stereotype is antiquated and dangerous, as it prevents individuals outside these demographic categories from being diagnosed and properly treated. Eating disorders strike children, adolescents, and adults; girls and boys, men and women; people of all ethnic, cultural, and economic backgrounds. Several years ago, during my training, I treated a severely underweight teenage boy with anorexia nervosa whose previous pediatrician had told him: “If you were a girl, I’d say you were anorexic.” As a result of this doctor’s failure to intervene, the patient’s condition rapidly deteriorated over the next two years, and by the time he presented in my office, he was in horrible shape.

Vigilance
Here are some concrete steps that parents can take to help prevent eating disorders. You may notice that, unlike other prevention tips you may have read, these tips center around proper nutrition and exercise. This is because all the feminist, feel-good, positive-body image talk in the world is not going to prevent eating disorders. Remember, anorexia nervosa has existed for centuries, long before thinness became fashionable. Eating disorders are triggered by an energy imbalance (consuming fewer calories than you expend) and perpetuated by malnutrition. If a child never becomes malnourished, she is extremely unlikely to develop an eating disorder.
• Make family meals a priority. As a parent, it is your job to prepare and serve nutritious foods. It is far better for a family to sit down to a balanced breakfast of cereal, milk, fruit, juice, and yogurt instead of grabbing a nutrigrain bar and running out the door.
• Closely monitor any changes in your child’s eating habits. Even seemingly “positive” dietary changes such as skipping desert, becoming vegetarian, or reducing fat intake can signal the onset of an eating disorder.
• Adopt a zero-tolerance policy towards any level of malnutrition. Do not allow your child to diet, skip meals, or cut out entire food groups. Children and teenagers need to eat three substantial, nutritious, well-balanced meals every day. Supervised, supported full nutrition is the best defense against an eating disorder.
• Be aware that eating disorders are sometimes triggered by unintentional malnourishment (for example, weight loss due to physical illness, depression, anxiety, stress, or surgery; fasting for religious purposes; side effects of a medication; intense physical exercise without a commensurate increase in nutrition). This type of malnourishment must be taken equally seriously. Dieting is not the only pathway to eating disorders (although it is the most common pathway in modern Western cultures).

Parents need to be on guard for early signs of eating disorders, especially during early adolescence, when most eating disorders develop. Since eating disorders are genetically transmitted, your child is much more vulnerable to developing an eating disorder if you or a relative has suffered from an eating disorder. Family histories of major depression and other mood disorders, anxiety disorders, OCD, and addictions are also risk factors for developing eating disorders. If you have a family history of eating disorders or other mental illnesses, you should know that your child is at greater risk for developing an eating disorder, and you should be extra vigilant.

Some early signs of eating disorders masquerade as “healthy” behaviors or extreme dedication, or can easily be dismissed as typical teenage behavior. However, parents know their kids well. Most parents recognize, long before formal diagnosis, that something is “not quite right” with their child, but they aren’t sure what is wrong or they don’t know what to do. Here are some early signs and symptoms:
• Change in eating habits. This can take many forms, including following a formal diet plan, skipping meals, eating only at certain times, refusing to eat with other people, or anxiety around food. Even seemingly positive dietary changes, such as becoming vegetarian, reducing fat intake, skipping snacks and deserts, and eating only organic foods, can be early signs of an eating disorder.
• Increased preoccupation with food: taking about food, reading diet books, collecting recipes, cooking, serving food to others, sudden interest in what other people are eating.
• Change in mood or behavior. Parents often notice dramatic changes in their child’s personality, such as irritability, anxiety, depression, moodiness, frequent crying, restlessness, withdrawal, changes in sleeping patterns, or loss of interest. Increased dedication to schoolwork, sports, or other extracurricular activities and obsessive behavior in other areas can also be early signs.
• Increase in exercise. The child may begin solo running, take up a new sport, or show increased dedication to her current sports. If she is an athlete, she may begin training excessively outside of team practices. If she is a dancer, she may begin practicing at home, signing up for more dance classes, and auditioning for every possible performance opportunity.
• Weight loss, failure to gain weight, or failure to make expected gains in height. ANY weight loss in a child or adolescent, even a few pounds, may be cause for alarm. ANY failure to grow or gain weight as expected warrants further examination.
• Loss of menstrual periods.
• Signs of binge eating (for example, large amounts of food disappearing overnight).
• Signs of purging (for example, discovering laxatives in your child’s purse or smells of vomit in her bathroom).

Immediate, Aggressive, Effective intervention
I have never heard a parent say: “I wish I had waited longer before getting my child into treatment.” Most parents whose children are in treatment for eating disorders regret not intervening sooner. In addition, many parents report that they wish they had sought out evidence-based treatment immediately, rather than continuing with ineffective treatment as their child’s health declines. If you notice any of the signs or symptoms listed above, take action immediately. Here’s how:
• Educate yourself about eating disorders and evidence-based treatment. FEAST (Families Empowered and Supporting Treatment for Eating Disorders) is an excellent resource for parents.
• Do not praise your child for her “healthy eating” habits or willpower around food. Instead, tell her that you have noticed a change in her eating habits and that you are concerned. For example: “I notice that you’re not enjoying ice cream with our family anymore. What has changed?”
• Be prepared for your child to insist that she is just trying to eat healthily, exercise more, or improve her performance in sports or dance. Many eating disorders begin this way but quickly spiral into deadly obsessions.
• Be prepared for your child to be in denial or to resist your efforts to intervene. Teenagers never say: “Mom, I think I’m developing anorexia nervosa, and I’m worried about my recent weight loss.” Denial, resistance, and lack of insight are symptoms of this disease, NOT indications that everything is OK. Don’t back down.
• Don’t waste time on “why.” When your child is developing an eating disorder, it is tempting to try to understand the reasons for it. Resist this temptation and tackle the symptoms immediately. The very foundation of ineffective eating disorder treatment begins with endless search for the “root cause” while the child continues to starve, binge, purge, and over-exercise as her physical and mental health deteriorate. A patient with an active eating disorder is generally unable to make effective use of psychotherapy because her brain is not functioning properly. Eating disorders are life-threatening illnesses with serious mental and physical risks. Think of your child’s eating disorder as a tumor. It must be removed immediately, or it will grow and metastasize. The surgeon does not need to know the reason for the tumor in order to operate and remove it. The sooner you intervene, the better your child’s chances for complete recovery. There will be plenty of time for psychological work, including an exploration of potential triggers, later on in recovery, once your child is well-nourished and physically healthy.
• As soon as you suspect a problem, take your child to the pediatrician for a complete physical exam. Unfortunately, most physicians do not have specialized training in eating disorders and are unlikely to notice an eating disorder until it is in its advanced stages. Thus, you cannot always trust your child’s pediatrician to spot a problem. I have had many patients whose physicians have completely overlooked telltale signs such as weight loss, missed menstrual periods, or failure to grow. Consider taking your child to a pediatrician or adolescent medicine physician who specializes in eating disorders. Remember, trust your parental instincts. If you think there is something wrong with your child, you are probably right. It is far better to intervene immediately and later discover that everything is fine, rather than waiting until your child is in the acute phase of a life-threatening mental illness.
• If you intervene at the first sign of an eating disorder, your child may not meet full criteria for anorexia nervosa or bulimia nervosa. Thus, she may be diagnosed with Eating Disorder Not Otherwise Specified, or she may not be diagnosed with an eating disorder at all. This does not mean that your child’s problem isn’t serious or that immediate, aggressive intervention isn’t necessary. It simply means that your child is in the beginning stages of what is likely to become a severe, life-threatening mental illness if left untreated (or improperly treated). Your child is most likely to achieve complete, lasting recovery treatment begins immediately, rather than waiting for her to develop full-syndrome anorexia nervosa or bulimia nervosa and the myriad of psychological and physical problems these illnesses entail.
• If your child has been in therapy for a while and she continues to restrict her diet, lose weight, binge, or purge, therapy is not working. In early recovery, it does not matter if your child has a good relationship with her therapist, enjoys speaking with her, or trusts her. The therapeutic relationship is only therapeutic insofar as it promotes health, wellness, and recovery. Insight, self-exploration, and rapport are useless in the wake of malnutrition. Speak with your child’s therapist about taking a different approach. If your child’s therapist refuses to talk to you, or if you are not satisfied with the results of treatment, find a different therapist.
• Seek evidence-based psychological treatment for your child and your family. Most therapists, even ones who specialize in eating disorders, are not up-to-date on the latest research and most effective treatments. I have worked with many families who have taken their child to multiple eating disorders specialists over a period of several years and seen no symptom improvement whatsoever. This is usually because the therapists were not aware of recent scientific research on eating disorders and were not using evidence-based treatments. For children and adolescents, the strongest evidence base is for Maudsley Family-Based Treatment (FBT). Maudsley FBT is a highly practical, empirically-validated treatment method which empowers the family to help the patient recover and focuses on immediate restoration of nutritional and physical health before tackling psychological issues. Research has shown that 75-90% of adolescents treated with Maudsley FBT recover within 12 months and maintain their recovery at 5-year follow-up. In contrast, traditional treatment generally takes 5-7 years and only 33% of patients achieve full recovery.
• Remember that you are an essential member of your child’s treatment team. Your child’s treatment will be most effective if you are fully informed and actively involved. Interview any potential physicians, dieticians, therapists, and psychiatrists without your child present before your child meets them. Make sure that you are comfortable with their philosophy of eating disorders and their approach to treatment. Insist on being informed about your child’s progress in treatment and ask what you can do to help her recover. If the therapist will not inform you or include you in treatment decisions, find a new therapist.
• Recognize that your child’s eating disorder is neither her fault nor her choice. Do not wait for her to “choose” recovery, because she can’t. It is your job to choose recovery for her until she is well enough to take ownership of her treatment. Try to separate the disorder from the child you know and love. She is in there somewhere, and some day, she will thank you.

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Fighting the Wrong Battles

I’ve become increasingly annoyed at the conflation of “body dissatisfaction” with “eating disorder.” The former is a culturally-driven socio-political phenomenon, whereas the latter is a severe, biologically-based mental illness. The former afflicts over 85% of American females, whereas the latter strikes only a small fraction of us (less than 1% for anorexia nervosa and 2-3% for bulimia nervosa).

There has been a great deal of controversy surrounding supermodel Kate Moss’s comment that “Nothing tastes as good as being thin feels,” and around Ralph Lauren’s ridiculously photo-shopped ads. Eating disorder clinicians and activists have been quite vocal about their opposition to these media bytes, arguing that they encourage eating disorders. I know that these professionals and activists have noble intentions, but I believe they are fighting the wrong battles.

I object to underweight models not because I believe they cause eating disorders, but because being underweight is harmful to the models’ physical and mental health, and viewing these images on a regular basis contributes to body dissatisfaction in most people. I refuse to have magazines in my office waiting room not because I believe they cause eating disorders, but because I am opposed to the blatant objectification of women. Besides, I think that fashion magazines are sexist, superficial, and boring.

Hanging in my office is a certificate of membership from NEDA (National Eating Disorders Association) which thanks me for my “support in the effort to eliminate eating disorders and body dissatisfaction.” I really wish they had eliminated those last three words.

I think the conflation of sadness with depression is analogous. The former, in its extreme and persistent form, is one symptom of the latter. The former is a natural, healthy emotional state that every human being experiences from time to time, while the latter is a serious mental illness caused by a combination of neurobiological, psychological, and environmental factors. I remember an incident that illustrates this principle beautifully. I was conducting an initial evaluation with an adolescent girl and her parents. When I asked the father whether he thought his daughter was depressed, he replied: “I don’t believe in depression.” Interesting response, I thought. As if depression were something like God or heaven or Santa Clause, something to be believed in or not. I asked the father to elaborate on his beliefs. He replied: “I think we all get sad sometimes, and that’s OK.” I smiled and gently responded that I agree with him – yes, all of us do get sad sometimes, and yes, that’s OK. However, some people experience prolonged, intense feelings of sadness accompanied by sleep and appetite disturbances, fatigue, thoughts of suicide, loss of interest, and difficulty concentrating. These people are experiencing major depression.”

Imagine if, in exchange for my membership in the National Depression Association, I received a certificate thanking me for my support in the effort to eliminate Major Depressive Disorder and sadness.” Laughable, isn’t it? Well, so is the ED/Body Dissatisfaction comparison. It trivializes the anguish that eating disordered people experience, and it falsely encourages those whose lives have not been touched by eating disorders to think that they “know how it feels.” Well, guess what. They don’t.

Eliminating all sadness in the world would probably not affect the prevalence of Major Depressive Disorder because sadness is but one symptom of depression, whereas depression is not a result of sadness. Likewise, eliminating body dissatisfaction would be fantastic for everyone, but it would not result in the elimination of eating disorders.

Contrary to popular belief (and, sadly enough, the belief of many eating disorders professionals), the media’s glorification of thinness is not responsible for the so-called “epidemic” of anorexia nervosa. Also contrary to popular belief, the incidence of anorexia nervosa has not increased dramatically in recent decades. Cases of what would now be diagnosed as anorexia nervosa have been documented as early as the medieval times, long before thinness was considered fashionable. These fasting saints shunned all sustenance to the point of emaciation not because they wanted to be skinny, but because they believed it brought them closer to God.

Unbeknownst to many, anorexia nervosa occurs in many non-western cultures. For example, recent studies have shown that the prevalence of anorexia nervosa in China and Ghana is equal to its prevalence in the US. The major difference is that patients in non-western cultures relate their starvation to profound self-control, moral superiority, and spiritual wholeness rather than to a desire to be thinner. Today’s American anorexics, like their medieval predecessors and non-western counterparts, all experience prolonged inability to nourish themselves, dramatic weight loss to the point of emaciation, amenorrhea, and denial of the seriousness of their condition. The self-reported reasons for starvation, it seems, are the only things that change across time and culture. I believe that an anorexic’s so-called reasons for starvation are simply her attempts to derive meaning from her symptoms, which are always filtered through a cultural lens. An anorexic does not starve herself because she wants to be thin, or because she wants to be holy, or because she wants to show supreme self-control. She starves herself because she suffers from a brain disease, of which self-starvation is a symptom.

Recent research suggests that anorexia nervosa is not a culture-bound syndrome, but bulimia nervosa is. Anorexia nervosa seems to be a distinct genotype that has been around for centuries and that manifests itself in various cultures and eras. Bulimia nervosa, on the other hand, appears to occur in individuals with a certain genetic / neurobiological predisposition who are exposed to a culture which combines massive amounts of readily available, highly palatable foods with a cultural mandate for thinness. This research implies that reducing or eliminating the cultural glorification of thinness may indeed reduce the prevalence of bulimia nervosa, but will have no effect on the prevalence of anorexia nervosa. I suppose that, once this awful waif model craze blows over, anorexics will simply find another “reason” to starve.

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Emotional Anorexia

Most patients with anorexia nervosa (AN) experience an ostensible “loss of appetite,” if you will, for all human needs. During refeeding, some patients with AN become uncharacteristically violent and hostile towards their parents, shunning all attempts at comfort or affection. Some therapists have referred to this phenomenon as “emotional anorexia.” While I’m not aware of any empirical literature on this topic, I do have some hypotheses of my own.

Like AN and other mental illnesses, the etiology of emotional anorexia is complex and multifaceted. I believe that the factors which contribute to emotional anorexia are, in order of relevance: 1.) Genetic predisposition, 2.) Neurobiological changes associated with malnutrition and refeeding, 3.) Psychological symptoms of AN, and 4.) Developmental and familial issues. Let’s examine each of these issues in turn.

GENETIC PREDISPOSITION. Between 50%-80% of the risk of developing AN is genetic. It is very likely, then, that genes play the most significant role in the development of emotional anorexia as well. The character traits which predispose people to AN: anxiety, obsessiveness, perfectionism, and harm avoidance, are present at birth and are determined primarily by genetics. People with this character structure tend to exercise restraint not just with their food, but also in other areas of their lives. They tend to be emotionally inhibited, most likely because they tend to be overly fearful of making mistakes.

Further, recent research has demonstrated that individuals with AN have difficulty processing emotional information. They tend to misperceive others’ emotions (for example, they are likely to think someone is angry with them when in reality the person is concerned about them), and they avoid emotionally intense situations. This type of personality creates the perfect template for the development of emotional anorexia.

Brain imaging studies have shown that individuals with AN have alterations in their anterior insula, a region of the brain which is critically important for interoception (the self-awareness of internal bodily signals). During the acute phase of their illness, individuals with AN are literally unable to sense hunger, fullness, tiredness, and changes in body temperature. Additionally, they have an imbalance between circuits in the brain that regulate reward and emotion (the ventral or limbic circuit) and circuits that are associated with consequences and planning ahead (the dorsal or cognitive circuit).

This combination of difficulty processing emotional information, disrupted interoceptive awareness, and disregulated reward-emotion circuitry renders anorexics incapable of experiencing pleasure from food, rest, sex, physical affection, or fun activities the way healthy people do. A hug may feel the same as a slap in the face; a smile may look like a sneer; a piece of chocolate cake may be as punishing as a tablespoon of cod liver oil; words of encouragement may sting like salt in a wound. People with AN feel safer and calmer when they shrug off affection and shun human contact as well as food.

NEUROBIOLOGICAL CHANGES ASSOCIATED WITH MALNUTRITION AND REFEEDING. Since the Minnesota Starvation Study, we have known that malnutrition causes biochemical changes in the brain which result in dramatic personality and behavior changes, such as depression, anxiety, irritability, apathy, loss of interest, isolation, and social withdrawal. The neurobiological changes associated with re-feeding are equally profound. Because starvation numbs emotions, many patients experience a resurgence of depression, anxiety, irritability, anger, and loss of control when food is reintroduced. Dr. Walter Kaye hypothesizes that individuals with AN have a shortage of serotonin in the brain, since serotonin is derived partially from food. More serotonin receptors are created in effort to harvest the scanty amount of serotonin available. Thus, when food is reintroduced and serotonin levels rise, the large number of receptors causes too much serotonin to be taken up, making the person feel extremely agitated and irritable. This makes eating a terrible emotional ordeal. It is very difficult to give or receive love and affection when you are struggling with intolerable anxiety and irritability.

PSYCHOLOGICAL SYMPTOMS OF ANOREXIA NERVOSA. So now we have a teenager with the perfect genetic template for emotional anorexia who is experiencing the profound neurobiological effects of malnutrition. In addition to these physiological effects, she is experiencing debilitating depression, feelings of worthlessness and inadequacy, she has lost interest in socializing, she has withdrawn from friends and family, and she has difficulty accurately perceiving emotions. When she isolates herself, she experiences less social reinforcement, which confirms the depressive schema that she is worthless and inadequate. Her athletic performance begins to decline, she has difficulty concentrating, and she is no longer asked out on dates. Her friends are alarmed by the changes in her physical appearance and mood, so they stop talking to her. Parents, teachers, coaches, and friends express extreme concern, which she misinterprets as anger, jealousy, or criticism. All of these things reinforce her feelings of worthlessness and inadequacy. I have had several patients with AN cry to me that their parents didn’t visit them at all while they were away at summer camp or college. Meanwhile, their parents confided to me that they wanted desperately to visit their daughter, but she told them not to, and they wanted to respect her autonomy. The patients insisted that they didn’t want their parents, yet lamented their absence. Clearly, there’s a disconnect here. The patient either a.) is not aware of her emotional needs, b.) doesn’t know how to express these needs, or c.) chooses not to express her needs because she is afraid, embarrassed, or ashamed. I believe that a, b, and c are all true.

One of the core features of AN which has persisted throughout the centuries is a sense of “needlessness,” of being “above” worldly pleasures and bodily needs. Medieval saints experienced this needlessness. They prayed for days on end without food, water, sleep, or socialization. Amongst these fasting saints, there are documented cases of what would today be diagnosed as AN. In certain non-western cultures such as China and Ghana, AN is as prevalent as it is in the US. The major difference is that patients in non-western cultures relate their starvation to profound self-control, moral superiority, and spiritual wholeness rather than to a desire to be skinny. Today’s American anorexics, like their medieval predecessors and non-western counterparts, experience some version of needlessness. Some anorexics have a grandiose sense of being “above” basic needs, including food, sleep, fun, love, and comfort. This grandiosity often stems from the extra burst of energy and euphoria that starvation brings them, coupled with the sense of pride and accomplishment that they have been able to override their body’s needs and diet to the point of emaciation. Other anorexics believe they are unworthy of food, sleep, fun, love, or comfort. These feelings stem from the debilitating depression that is triggered by malnourishment and exacerbated by body dysmorphia and self-loathing. Many anorexics vacillate between these two mind frames, but the end result is the same: emotional anorexia.

The neurobiological changes associated with refeeding cause most patients to experience intense mood swings, irritability, and anger. The psychological trauma of AN adds fuel to the fire. Eating more and gaining weight are an anorexic’s worst nightmares, and this is precisely what is required of her in order to recover. She gains weight, experiences tremendous fear as her appetite kicks into high gear once again, and she is no longer “allowed” to diet. Her body dysmorphia and self-loathing are more intense than ever. Her irritability, agitation, moodiness, and depression are at an all-time high. She withdraws and isolates herself even more, feeling as though she is “too fat” to be seen in public and undeserving of love, comfort, friends, or fun.

Enter the old-school therapist. The young patient is absolutely miserable and desperate to feel better. She has little insight into her symptoms and trusts the therapist completely. The therapist searches through the patient’s past to uncover the “root cause” of her AN. Lo and behold, it is discovered that her parents were too controlling, too overbearing, too overprotective, too critical, too mean, too distant, too neglectful, or too abusive (often some combination of the above). The patient, who is in the midst of the neurobiological hurricane that is re-feeding, becomes angry and hostile towards her parents once she “realizes” that they have caused her current misery. Her parents take her to appointments, prepare her food, and insist that she eats it, thus making her even more fat and unlovable. Her parents try to comfort her; she pushes them away. She is, at times, violently angry with them. After all, they made her anorexic, and now they are making her fat. The same pattern also develops with certain members of her treatment team. She views their interpretations as criticisms. She perceives their requirement of weight restoration as their attempts to fatten her up. Her parents and her treatment team are ruining her life as they chip away at the one thing that has ever made her feel good: the AN.

DEVELOPMENTAL ISSUES. The concept of mother is inextricably intertwined with the concept of food. As developing fetuses in our mother’s womb, we receive nourishment from her. We are born with a rooting reflex, which prompts us to suck our mother’s breast or a bottle. Without this reflex, and without a mother or other caregiver to provide the nourishment, we would die. As infants, we cry when we are hungry. Mother comes running; she holds us and feeds us. Throughout our childhood and adolescence, mother is probably responsible for most of the food shopping and meal preparation.

When a teenager develops AN, her mother is often the first to notice a problem. Mother may encourage or require her to begin treatment. Mother often prepares and serves her food during re-feeding. Mother may ask when and what she last ate, and may require that she eat just a little bit more. Is it any wonder, then, that an anorexic’s feelings about food spill over into her feelings about her mother?

Some psychoanalysts postulate that AN develops from a lack of empathic attunement between mother and child. The mother is not attuned to her child’s emotional needs, so the child is unable to meet her own needs, and this is manifested in her inability to feed herself. There are no empirical data to support the theory that lack of maternal empathic attunement causes AN, and in fact, I believe that this theory is 100% false in terms of explaining the etiology of AN. However, I can understand how this principal may operate subconsciously in the mind of an ill patient. Individuals with AN have great difficulty getting their needs met. They may be unaware of their own needs, they may feel as though they don’t deserve to have their needs met, or they may believe they are “above” having needs. This applies to emotional needs as well as nutritional ones.

I suspect that there is a modest correlation (which does NOT imply causation) between a mother’s inability to provide for her child’s physical or emotional needs and the child’s development of AN. Remember, 50-80% of the risk for developing AN is genetic, so it is very likely that a patient with AN has a first-degree relative (often the mother) who also has a history of AN. If the mother is currently struggling with AN, her fear of food and intolerable anxiety may render her unable to provide for her child’s basic physical and emotional needs. Even if the mother is currently healthy but has a personal history of AN, she will likely share the biochemical and temperamental traits of her ill daughter, albeit to a lesser degree. The recovered AN mother’s deficit in interoceptive awareness may spill over onto her child. She may struggle to meet her daughter’s needs because she has difficulty sensing and meeting her own needs.

Teenagers who develop AN tend to be “model children.” They are almost universally intelligent, well-behaved, hard-working, and gifted at athletics or artistic endeavors. They follow all the rules to the letter. They have never caused a problem for their parents or teachers. The development of AN and the process of recovery leads to an examination of one’s life. The experience of having a life-threatening, soul-killing, personality-destroying illness is enough to make any teenager step back and take stock. Teenagers who are recovering from AN may begin to feel resentful that they have lived a “faked existence” and “played by everyone else’s rules.” They may realize that they have missed out on a lot of fun and excitement by being so straight-laced. With their therapist’s encouragement to express their emotions authentically, they unleash their fury onto the people who have been there through it all: their parents.

This is not a cohesive or well-articulated theory, just a compilation of related thoughts. I hope that research will shed some light onto this phenomenon in the near future.

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Palliative Care for Anorexia Nervosa?

I recently read an article in the International Journal of Eating Disorders entitled Managing the Chronic, Treatment-Resistant Patient with Anorexia Nervosa (Strober, 2004). Though eloquently written and artfully persuasive, this was probably the most depressing journal article I have ever read. The author, Michael Strober, seeks to help readers “resolve the paradox of caring for patients who seem so decidedly opposed to change.” Essentially, Strober advises psychologists to avoid pushing, or even encouraging, full nutrition and weight restoration in chronically ill patients with AN because these attempts will backfire by upsetting the patient emotionally and thus leading to premature termination of therapy. Instead, he argues, therapists “can expect little, should seek nothing, and must largely defer to the patient in regards to the objective of the time shared together.”

Strober states that the therapist’s attempts to encourage re-feeding “will feel like an assault” to the patient and are “certain to induce peril.” He warns therapists that their efforts to coerce patients into hospitalization or other much-needed medical care will result in “a potentially dangerous exacerbation of symptoms.” The article presents two tragic case studies of women in their late 20’s who have been chronically ill with AN since early adolescence. Each story is presented as a cautionary tale describing the deleterious effects of requiring full nutrition and weight restoration in these types of patients. Finally, Strober admonishes therapists to be aware of their counter-transference with such patients and advises them to “concede the reality that there may be little to do to drastically alter the course of a patient’s illness,” and notes that “this is neither failure nor inferiority.”

I view this entire philosophy as a manifestation of both failure and inferiority. Failure on the part of professionals who fear an emaciated patient’s wrath more than they fear her death. Failure on the part of a profession which espouses the dogma that avoiding premature termination of treatment is more important than avoiding premature termination of the patient’s life. Failure on the part of a philosophy that values nurturing the therapeutic relationship more than it values giving a patient a fighting chance at life, health, and happiness. These patients have not failed treatment. Treatment has failed them.

Strober argues that there is a place in our field for palliative care for treatment-resistant anorexics. I disagree. Anorexia nervosa is, by definition, resistant to treatment. The “peril” that ensues during re-feeding is real and universal. Re-feeding is agonizing for the patient herself, her friends and family, and her treatment team. Anyone who has ever made the heroic journey from AN to recovery will tell you that. I have never met an anorexic who gladly relinquished rigid control over her diet, voluntarily prepared and consumed high-calorie meals, and excitedly welcomed weight restoration without struggle. A person such as this would not have been diagnosed with AN in the first place. Chronically ill patients with AN are not resistant to treatment. Treatment is resistant to them.

Towards the end of the article, Strober warns therapists to keep their counter-transference in check by not pushing patients too hard, not expecting recovery, and resigning themselves to the reality that these patients are destined for a lifetime of illness and misery followed by a premature death. He notes that many therapists are not well-suited for providing palliative care to treatment-resistant anorexics. I, for one, am certainly not cut out for that type of work. I am not able to sit impassively with a patient who has been ill for fifteen years without taking draconian measures to propel her towards health. I recognize that responsibility for her recovery, at least initially, lies with me and with her family. I would not expect a patient with that level of illness to embrace recovery. That’s my job, not hers.

Individuals with AN are almost universally brilliant, talented, sensitive, and intense. They have so much potential, so many gifts to offer the world. They are physicians and nurses and lawyers, scientists and professors and teachers. They are outstanding athletes, writers, singers, dancers, actresses, and artists. Consider three-time Grammy-winning singer Karen Carpenter who died of AN at age 33 and world-class gymnast Christy Henrich, who died of AN at age 22. These women were beloved daughters, loyal sisters, caring friends.

It baffles me that, in a society which purports to value human life, we allow these precious lives slip away. The Bush administration placed restrictions on stem-cell research, supposedly out of concern for the sanctity of life. Nearly half of Americans are opposed to abortion. Our society believes that elderly, terminally ill patients in excruciating pain must not be allowed to die, as evidenced by the fact that doctor-assisted suicide is illegal in every state except Oregon. States have laws which allow for the involuntary hospitalization of imminently suicidal and floridly psychotic patients, recognizing that these individuals are not well enough to care for themselves. Psychiatric hospitals use 4-point restraints, sedatives, and padded rooms to prevent patients from injuring themselves. Prisoners are forbidden from having sharp objects and belts in order to protect them from taking their own lives. Death row inmates who attempt suicide are resuscitated. Don’t we owe the same to innocent people who are suffering from a horrible eating disorder?

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Food, Safety, and Trust

Earlier this week, I read about a hospital program that provides medical stabilization for patients with eating disorders. The medical director of this program wrote that if a patient “refuses” meals and liquid supplements, the staff observes the patient, without intervention, for approximately 48 hours. If the patient continues to “refuse” nourishment after that point, the physician and psychologist have a discussion with the patient about using a nasogastric tube, but recommend oral feeding instead.

Disheartened to read about this hospital’s approach, I politely asked the medical director to explain the medical or psychological rationale for waiting 48 hours before providing a hospitalized, medically unstable eating disorder patient with some form of nourishment. Her response was that most patients with anorexia “are not at increased at increased medical risk by waiting one or two days to begin serious re-feeding.” Further, she wrote that it is “medically and psychologically safer” for patients to under-eat for a couple of days and then start re-feeding, when they are “fully committed to the process and trusting the treatment staff.”

I don’t have a medical degree, but I do know more than the average person about the medical complications of eating disorders. I’m not aware of any medical reason why it would be safer for a low-weight, medically-compromised anorexic patient to go without any nourishment, or without sufficient nourishment, for ANY period of time, let alone 48 hours. It is my understanding that re-feeding should begin as soon as possible. Clearly, severely malnourished patients who are at risk for re-feeding syndrome should be started on a low-calorie meal plan which is gradually increased by several hundred calories each day until they reach an appropriate caloric level for weight restoration. But still, the re-feeding process should begin immediately, right? Am I missing something here?

I do have a doctorate in psychology and a thorough understanding of eating disorders, and I am well aware of the potential psychological repercussions of this hospital’s approach. Critically ill patients with eating disorders are not “refusing” nourishment. They are suffering from a disease that renders them unable to nourish themselves or accept nourishment from others without a fight. Even if it were the case that people with anorexia “won’t” eat, rather than “can’t” eat, I would still argue that society in general, and the healthcare establishment in particular, has a moral obligation prevent people with mental illness from inflicting damage upon their bodies and brains.

For a person with a mild eating disorder who is being treated on an outpatient basis, it is unacceptable, and counter-productive to recovery, to under-eat for even one meal. Imagine, then, a severely ill, medically compromised patient who is admitted to a hospital, most likely after years of unsuccessful outpatient or residential treatment, being presented with a choice of whether, what, or how much to eat. Eating disorder patients need to be protected from their symptoms, which not only wreak havoc on their bodies, but cause unrelenting psychological anguish as well. Food is not optional for anyone. Full nutrition, as soon as possible and by whatever means necessary, cannot be presented as optional in eating disorder recovery.

The medical director of this hospital program wrote that, after approximately 48 hours of not eating or under-eating, patients can begin re-feeding “fully committed to the process and trusting the treatment staff.” I disagree with this assertion. Patients with eating disorders are rarely, if ever, “fully committed to the process” until they are much further along in their recovery. This anosognosia is a symptom of their illness, and it’s not likely to disappear after two more days of starvation. Further, “trusting the treatment staff” is not a necessary prerequisite for re-feeding. Eating disorders do not “trust” healthcare professionals because the role of healthcare professionals, at least in theory, is to annihilate eating disorders. Gaining the trust of the patient, however, is a different story. I would wonder how a patient could ever trust a staff that stood by as she starved for a couple of days. If you can’t count on a medical stabilization program to ensure full nutrition and protect you from your illness, then who can you rely upon?

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What’s That About?

“It’s about control.”

This statement has been applied to everything from OCD to eating disorders to self-injury to domestic violence. But, really, what does this statement mean?

When I hear that X is about Y, I generally interpret this statement in one of two ways: 1.) Y is a theme of X or 2.) Y is the most salient feature of X. For example, if someone says that Romeo and Juliet is about undying love, my interpretation is that undying love is a primary theme of Romeo and Juliet. Or if someone says: “My birthday is about me,” I interpret that as “I am the most important person on my birthday” in terms of attention, presents, and deciding how to celebrate.

In regards to the cliché that a certain psychological problem is about control, both of these interpretations make sense to a certain extent. Control is both a theme and a salient feature of OCD insofar as sufferers are overly preoccupied with controlling their external environment, as well as their thoughts and actions related to their particular obsession. For example, a person with OCD may spend hours scrubbing her body and cleaning her home in order to control the spread of germs and prevent herself or others from becoming ill.

Control is both a theme and a salient feature of eating disorders insofar as sufferers become preoccupied with controlling their dietary intake, exercise, and weight. Individuals with anorexia tend to be “over-controlled,” rigid, and perfectionistic not only with food but in other areas of their lives, while individuals with bulimia experience periods of “dyscontrol” of their emotions and food intake, resulting in binge /purge episodes.

Control is both a theme and a salient feature in the lives of individuals who engage in self-injurious behaviors such as cutting. Many, though not all, individuals who cut have experienced physical or sexual abuse, which results in feeling a lack of personal control over one’s life and one’s body. People who cut usually experience overwhelming emotions that they are unable to control. Some people use self-injury as an interpersonal message with an intent to control or manipulate others.

Control is both a theme and a salient feature in cycles of domestic violence. Through subtle and overt messages, abusers control and manipulate their victims. It is easy for abusers to control their victims because the victims are usually smaller and physically weaker than they are. In most cases, abusers have financial and / or emotional control over their victims. And, sadly, victims feel a devastating loss of personal control over their own lives.

I am concerned, however, that people who claim that a mental illness or psychological phenomenon is about control have an entirely different interpretation of this phrase. For most people, I think “It’s about control” translates to “it is caused by a lack of control or a need for control.” This interpretation has no empirical backing and, when espoused by treatment professionals, leads to ineffective treatment.

For instance, many therapists believe that eating disorders are “about control,” meaning that they believe that the etiology of eating disorders is rooted in a subconscious need for control. As a result of this theory, their treatment entails helping the patient gain a sense of personal control in other areas of her life, and advising her parents to “back off” of the power struggle around meals, with the assumption that eventually the patient will no longer feel the need to control her food intake.

There is no scientific basis for this theory or this treatment approach, and I have never met a person who has recovered this way. I’m sure such people exist, I’ve just never seen them. I would presume that these individuals went through years of treatment, suffered numerous medical and psychological problems, and spent many thousands of dollars before finally recovering. Recent scientific evidence suggests that eating disorders are biologically-based, genetically transmitted brain diseases that are triggered by an energy imbalance and perpetuated by malnutrition. There’s no room for “control” in this etiology.

While I’m on the subject of about, there’s another use of the word about that perplexes and frustrates me. Case in point: a very well-regarded eating disorder recovery website has the following mission statement on its homepage:

“We are dedicated to raising awareness about eating disorders… emphasizing always that eating disorders are NOT about food and weight.”

What does this mean? Surely, it cannot mean that food and weight are not themes in eating disorders. Nor can it mean that disturbances in food and weight are not a salient feature of eating disorders. By definition, individuals with eating disorders manifest disturbances in eating behavior, weight loss, or excessive preoccupation with weight. I can only assume, then, that this statement means that eating disorders are not caused by food and weight (or disturbances thereof). If this is the meaning of the mission statement, then the statement is undeniably false.

The latest scientific research tells us that eating disorders are, in fact, set into motion by disturbances in eating and weight. A person with a biological predisposition to anorexia nervosa or bulimia nervosa will not develop the illness unless he or she experiences a disturbance in eating and/or weight. Anorexia nervosa and bulimia nervosa are triggered by under-nutrition, which may initially be intentional (e.g., the decision to diet, “eat healthy,” or exercise more) or unintentional (e.g., the result of an illness, surgery, injury, medication, or another mental illness such as depression). The cycle of starvation in anorexia nervosa is maintained by malnutrition, and the illness is most severe and most deadly when the patient is underweight. The restrict/binge/purge cycle in bulimia nervosa is also self-perpetuating and is triggered or exacerbated by disturbances in eating behavior and preoccupation with weight. Full nutrition, weight restoration, cessation of restricting, bingeing, and purging behaviors, and decrease in preoccupation with weight are essential for full recovery. In conclusion, eating disorders are absolutely about food and weight. To neglect this perfectly obvious fact is to sabotage treatment.

Scientist-practitioner ranting notwithstanding, I think I do understand what that mission statement is intending to communicate. I think it is trying to convey that eating disorders are not just about food and weight; they also entail tremendous psychological suffering. I think the statement is trying to emphasize that correction of disturbances in eating and weight is not sufficient for full recovery, as psychological issues must be addressed as well. Finally, I think the statement hopes to convey that eating disorders are serious mental illnesses that bear little resemblance to typical dieting and body image woes.

While I applaud the website’s attempt to convey the aforementioned messages, I think the way the statement is worded has the potential to create a misunderstanding (or, at the very least, it doesn’t bring people closer to an accurate understanding). I’m guessing that eating disorder sufferers and their families, as well as the general public, will misinterpret the message, most likely in the manner I described. The consequences of such misinterpretation can be tragic.

We have a responsibility to people with eating disorders to provide them, and their families, with accurate information. Further, we have a responsibility to educate the public about eating disorders in order to reduce stigma, garner support, facilitate early detection, and lobby for more effective treatment. To start, let’s make sure the messages about eating disorders that we send, whether in person, in print, or on the internet, are accurate, understandable, easy to interpret, and scientifically-sound.

Isn’t it about time?