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Iatrogenic Effects

The year is 1892. Emily, age 14, is the second of six children in a Midwestern farming family. One evening in March, Emily’s mother catches a glimpse of her daughter undressing and is taken aback by how slim she looks. Over the next few days, mother notices that Emily eats very little at family meals. She mostly just pushes her food around the plate and slips pieces of her food under the table to the family’s two dogs.

Later that week, Emily’s older sister, Cora, confides in her mother that Emily is no longer getting her monthly cycles. Now mother is greatly concerned, and she has a talk with her husband, who is equally worried. Both parents sit down with Emily and express their concern over her poor eating habits, weight loss, and absence of menstrual cycles. In response to her parents’ talk, Emily bursts into tears. “I just can’t eat,” she cries. “I just can’t.” Mother and father hug their daughter, comfort her, and let her know that they will be taking her to the family doctor the next morning.

When Dr. Benson examines Emily the following day, he is alarmed by his young patient’s gaunt appearance and flat affect. She is no longer the bubbly, robust young girl he has known since birth. Emily’s pulse is much lower than normal, her muscles have wasted, and her adolescent figure has shrunken to a pre-pubescent one.

“Emily is gravely ill and melancholy,” Dr. Benson tells the worried parents. “She is malnourished, and she will need lots of food and rest to recover. She needs complete bed rest for the next three months, plenty of food at each meal, and six tall glasses of milk per day. I will see her again next week.”

Emily cries heavily all the way home, burying her head in her mother’s skirt. As soon as the family gets back to their house, her mother prepares her a large plate of food with extra bread and butter and a tall glass of milk. Mother sits beside Emily and strokes her daughter’s hair as she stares – terrified – at the heaping plate of food. “You will not be doing any chores this spring,” her father tells her firmly. “Cora will do your indoor chores and Ethan will take over your outdoor chores. You will not be returning to school this year – the 2-mile walk is too strenuous for you in this condition. Cora will speak with your teachers and bring home your assignments. You will study from home. You will return to school and chores when you are well.”

“But Papa…” pleads Emily. “I have to –“

“That’s enough, young lady. You know better than to take that tone with me. This is final.” With that, Emily’s father abruptly leaves the room. Tears stream down Emily’s cheeks as she weeps silently. Mother strokes her back and whispers: “Come on, sweetie. Eat.” Hands shaking, Emily picks up her fork and takes a bite. Mother waits with her at the table for the next two hours as she finishes every last bite of food and every last drop of milk.

19th century family

Dr. Benson makes house calls weekly over the next few months. Emily is always lying on her bed, reading and sipping a glass of milk, when he arrives. He watches the young girl slowly put on weight, regain her strength and stamina, begin to smile again, and then blossom into the cheerful teenager she was meant to be. By the time June rolls around, Emily has resumed her monthly cycle and returned to her normal weight. At this point, Dr. Benson gives her permission to begin doing some light chores around the house.

By September, Emily is eating with gusto. She has had three monthly cycles in a row and has regained her curvy figure. She returns to school and resumes all of her farm chores. Her parents are relieved to have their daughter back.

The vignette above illustrates how Anorexia Nervosa (AN) would have been treated several generations ago. Quite a stark contrast from how AN is treated today, isn’t it? The illness itself has remained basically the same throughout time, but the way that people conceptualize it and respond to it has changed dramatically. Consider the following differences between Emily’s treatment in 1892 and the treatment Emily’s great-great-granddaughter Marissa received in modern times:

1.) Emily’s parents are immediately concerned by her weight loss and dwindling food intake. They view weight loss in a growing adolescent as a sign of illness and take her to the doctor immediately. Marissa’s parents are pleased when they notice her becoming slimmer shortly after her 14th birthday. They praise her for foregoing desserts and snack foods. They encourage her interest in athletics and bring her jogging with them in the morning.

2.) Emily’s family doctor is immediately concerned by his young patient’s weight loss, lack of menses, and changed demeanor. At her 15-year-check-up, Marissa’s pediatrician commends her on her 12-pound weight loss. When Marissa’s mother expresses concern to the pediatrician about her daughter’s low heart rate and absence of menses for the past three months, the doctor explains that it is common for female athletes to lose their monthly cycle, and that Marissa’s low heart rate is also due to being a runner.

3.) The prescribed treatment for Emily – full nutrition and complete bed rest – is commenced immediately and aggressively. Eating more food is not recommended, or even suggested, for Marissa. Marissa continues running with the blessing of her doctor and the encouragement of her coach.

4.) The doctor views Emily’s parents as competent agents to re-feed their starving daughter and enforce bed rest for a prolonged period of time. Marissa’s parents are advised to “stay out of the food business” and admonished not to be the “food police.”

5.) Dr. Benson monitors Emily’s condition weekly and supports the family throughout the recovery process. Emily’s menstrual periods return naturally as she restores a healthy weight. Marissa’s pediatrician does not see her again until she develops a stress fracture 5 months later. Marissa has now lost a total of 20 pounds, and her pediatrician gently suggests that she tries to eat a little more. The pediatrician also refers her to a gynecologist, who prescribes birth control pills to re-start her periods.

6.) Emily is expected to comply with the prescribed treatment, and parents are expected to enforce it. Marissa restricts her food intake even more. She is now eating nothing but fruit, vegetables, and chicken breast. Scared to make matters worse, her parents say nothing.

7.) Emily eats hearty meals with her family every day for breakfast, lunch, and dinner, plus plenty of whole milk in between. Unable to watch her daughter starve herself any longer, Marissa’s mother takes her to a local therapist who was recommended by a neighbor. This therapist begins meeting with Marissa weekly, and also refers them to a family therapist and a dietitian. Marissa is now attending multiple appointments each week and following a 1600-calorie exchange plan created by her dietitian. She prepares her own meals, weighing and measuring everything.

8.) The doctor recommends chamomile tea with honey to soothe Emily’s nerves. Neither Emily nor her parents are blamed for her AN. The etiology of the illness is not discussed with Emily or her family, as it is not known. Marissa’s weight does not change, but her mood deteriorates. The therapist refers Marissa to a psychiatrist, who prescribes Lexapro and Klonopin. The family therapist suggests that Marissa’s AN is a cry for attention, as her father works long hours at his law firm and her mother is very preoccupied caring for her younger son with autism.

9.) Emily’s weight was restored to her normal range within three months of commencing treatment. She remains home with her family throughout and maintains good physical and mental health for the rest of her teenage years. By her 16th birthday, Marissa has lost 4 more pounds (a total loss of 24 pounds in 2 years). Her therapist recommends residential treatment at a well-marketed eating disorder treatment center in another state. Marissa spends 3 months at this residential treatment center. The psychiatrist there prescribes two additional psychotropic medications. Within a month of returning home, Marissa relapses and returns to the center for another 3 months.

10.) Emily maintains good relationships with her parents and siblings. She trusts her family to help her when she needs them. By the time she turns 18, Marissa has had three psychiatric hospitalizations, four stays in residential eating disorder treatment, and is taking five different psychotropic medications in addition to Ambien for sleep and birth control pills to regulate periods. She barely speaks to her parents and refuses to sign consents to allow them to access her healthcare information.

Emily and Marissa developed the same illness at the same age but received very different treatments and thus had very different outcomes. Emily’s AN was completely resolved within 6 months, whereas Marissa remains gravely ill and in intensive treatment four years later. Marissa experienced the iatrogenic effects that are so prevalent in modern eating disorder treatment. Iatrogenic effects are harmful outcomes caused by a medical intervention. In other words, a treatment which is intended to help a patient ends up making her condition worse or creating a new problem that wasn’t there before.

Marissa’s story is all too common. The adults around her – with good intentions – inflicted harm by prolonging her state of semi-starvation, prioritizing her adolescent autonomy above her physical health, disempowering her parents, alienating her from her family, subjecting her to time-consuming, costly, and ineffective therapies, prescribing powerful psychotropic drugs that may not have been necessary, isolating her from her primary support system, and surrounding her with other mentally ill teenagers.

modern girl

Clearly, some teenagers with Anorexia Nervosa have complicated presentations with multiple comorbidities which require a team of professionals and specialized care. But there are also many cases in which a simple and straightforward intervention would be far more effective and efficient than the iatrogenic treatments that so many kids and families endure. This is precisely why Family-Based Treatment (FBT) is so effective: it minimizes the iatrogenic effects of other eating disorder treatments. Mainstream eating disorder treatment often morphs Emilys into Marissas.

What would have happened to Marissa if she had been provided with the same treatment as her great- great-grandmother Emily? Would she, too, have regained full health in a matter of six months, and bounced back into a vibrant adolescent life? It’s impossible to know for sure, but it seems likely that she could have. It’s definitely worth a try. Our 21st century Marissas need and deserve treatment that is AT LEAST as effective as 19th century Emilys.

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After Weight Restoration: The Role of Motivation

Motivation is the process that initiates, guides, and maintains goal-oriented behaviors. It involves the biological, emotional, social, and cognitive forces that activate behavior. Basically, motivation is what drives us to act.

In eating disorder circles, motivation generally refers to an inner drive to achieve or maintain recovery. Given that anosognosia is a primary symptom of Anorexia Nervosa (AN), most patients have little or no insight or motivation while they are ill. When a person does not perceive herself as ill, she will not be motivated to recover. When a person perceives himself as superior while undernourished, emaciated, and hyperactive, he will be highly motivated to maintain his AN.

Fortunately, motivation is not necessary to begin recovering from AN. In Family-Based Treatment (FBT), motivation is neither expected nor required of patients during Phase I (re-feeding and weight restoration). So long as the parents are highly motivated to return their child to good health (as most parents certainly are), patient motivation is unnecessary.

There are two types of motivation:

Extrinsic motivation is a drive to perform an activity to attain a particular outcome. Extrinsic motivations come from outside the individual. For example, a student is motivated to study in order to earn good grades and gain admission to an elite college.

Intrinsic motivation is an inner drive to perform an activity for personal reasons, based on interest or enjoyment of the task itself. Intrinsic motivation exists even in the absence of external reward. For example, a young artist who is passionate about painting spends hours in the studio completely immersed in her art.

Parenting often involves the use of extrinsic motivation early on, as a pathway to developing intrinsic motivation. A toddler is motivated to use the toilet by getting a star on her chart; a preschooler is motivated to follow her parents’ rules to avoid getting a time-out; a teenager is motivated to be home by curfew to avoid getting grounded.

The ultimate goal of parenting, of course, is for the children to grow into independent adults who are no longer dependent on extrinsic motivation to exist in society. Eventually, the child feels intrinsically motivated to use the toilet because sitting in soiled underpants is uncomfortable; she is kind to her friends and siblings because it is the morally correct thing to do and she wants to maintain good relationships with them; she comes home at a decent hour so that she can get a good night’s sleep and function well the following day.

Similarly, a long-term goal of treatment for Anorexia Nervosa is for the patient to be intrinsically motivated to stay healthy and remain in recovery. But while we wait for intrinsic motivation to develop, it is perfectly fine and, in many instances, absolutely necessary, to impose external motivations in order to nudge the person along towards recovery.

Patients with Anorexia Nervosa often have little or no intrinsic motivation to recover during their acute phase of illness. In fact, most patients are highly motivated to continue engaging in eating disorder behaviors because there are powerful biological, psychological, and social forces compelling them to do so. For this reason, it is often essential to use extrinsic motivations of some sort to get patients to engage in recovery-oriented behavior such as eating meals, gaining weight, refraining from purging, and attending appointments with their treatment team.

Patients with AN are often compliant, rule-abiding people-pleasers. We can harness these traits in a positive way to promote recovery. It is common for patients to report that they are eating and gaining weight to make their parents happy or to please their doctors. It is even more common for patients to comply with re-feeding and maintain their ideal weight in order to avoid hospitalization or continue playing the sport they love.

Parents often worry that, if left to her own devices, their child would most certainly eat too little, exercise too much, start purging again, and fall down the rabbit hole once more. This worry is completely valid, and this is precisely why patients need a very high level of support and monitoring for a long time after diagnosis. Incidentally, the need for a high level of support and monitoring continues for much, much, much longer than what is provided by most treatment programs or paid for by most insurance companies. One of the reasons why patients need such high levels of support for so long is that intrinsic motivation is neither realistic nor possible for most patients until they are further along in recovery.

While acutely ill patients often lack the motivation to recover, many patients who are weight-restored and further along in their psychological recovery feel very motivated to stay well. I believe that there are several reasons for this shift in motivation in the later stages of recovery:

1.) The ability to think more clearly, thanks to a well-nourished brain and body.

2.) Maturity. Patients get older and more mature as they progress through recovery, and thanks to a more developed prefrontal cortex, they can think ahead, make plans, and follow through with their intentions.

3.) Perspective. Patients in the later stages of recovery have often been through hell and back. They have reclaimed their lives, and while they may not remember much of the acute phase of their illness, they know it was awful and they have no intention of going back.

4.) Parental intervention. Parents who have helped their children recover from AN tend to be extremely motivated to help them stay well. Perhaps more importantly, they feel empowered to use the tools and strategies they’ve learned through treatment to maintain an environment conducive to ongoing recovery and to set limits, without hesitation, on any behavior that jeopardizes recovery.

Motivation seems to be the natural consequence of restored health and improved insight. Once an adolescent or young adult is no longer encumbered by AN, he begins to realize how sick he once was, and how much AN ruined his life. As he returns to school, sports, hobbies, and an active social life, he begins to build a life worth living. This new life motivates him to stay in recovery and deters him from engaging in behaviors that could lead to relapse.

I have found that older adolescents and young adults are often motivated to stay in recovery in order to achieve their goals. For example, they want to go away to college or graduate school, they want to study abroad, they want to get married and have children, they want to travel the world, they want to have a rich and meaningful life that is not dominated by intrusive thoughts about carbs or calories or the circumference of their thighs.

How can you enhance motivation in someone who is recovering from AN? Well, intrinsic motivation, by definition, must grow and flourish from within. It cannot be imposed upon someone from the outside. However, there are a few things that family members and clinicians can do which may facilitate development of intrinsic motivation:

1.) Help the person build a full, rich, meaningful life.

2.) Remind the person periodically (not forcefully or frequently) that his new life would not be possible without continued recovery.

3.) Highlight and enhance the personal characteristics that have helped the person achieve and maintain recovery (e.g., “You are such a strong, courageous, dedicated person to have overcome this illness”).

4.) Help the person identify his core values and support him in living a life that is congruent with these values. What is most important in life? How does he want to be remembered by loved ones after he dies? Unless the person is acutely ill with AN, he is unlikely to say that being thin, exercising excessively, or avoiding sugar and flour his core values.

Staying focused on core values and pursuing a meaningful life are powerful motivators and potent antidotes to the anorexic thoughts that come to visit from time to time.

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After Weight Restoration: The Role of Insight

One of the hallmark symptoms of Anorexia Nervosa (AN) is anosognosia, or a brain-based inability to recognize that one is sick. For this reason, most patients have little or no insight when they first present for treatment. Even months into effective treatment, most patients with AN continue to demonstrate anosognosia from time to time, if not consistently. The irony here is that most patients with AN do not believe they are sick until after they have gotten well.

I am outspoken in my belief that insight is unnecessary, not to mention unlikely, in early recovery from Anorexia Nervosa (AN). I do not expect my patients to have any insight whatsoever early on in their treatment with me. I expect kids with AN to present in my office denying that they have a problem. Their lack of insight does not delay or undermine treatment one bit.

In Family-Based Treatment (FBT), the patient is not required to demonstrate any insight at all during Phase I (Re-feeding and weight restoration). Phase II (returning control of eating to the adolescent) and even Phase III (establishing a healthy adolescent identity) can be successfully completed with a relatively small amount of insight on the patient’s part.

The re-feeding and weight-restoration components of treatment can be achieved without the patient’s consent or compliance. Through FBT and similar family-centered approaches, parents can feed their children complete, balanced nutrition and ensure that they maintain a healthy weight for as long as necessary. In theory, a patient could exist in an externally-maintained state of physical health forever, which would be far better than suffering the long-term medical and psychological consequences of AN. But this is not recovery.

Children and younger teens tend to lack the maturity to develop good insight even after their AN has been in remission for quite some time. Lack of insight is completely normal at this stage of development, even for kids who have never had a brain disorder. It is not necessarily problematic for recovering adolescents to lack insight as long as they are living safely under their parents’ roof.

For older adolescents and young adults, however, there comes a point later in recovery, after physical health is restored and most mental symptoms have subsided, when a patient does need to develop some insight about their illness and “own their recovery.” Patients do not need insight to get well, but they certainly do need insight in order to live a healthy, fulfilling, independent life.

As a side note here, the type of insight I am referring to here has nothing to do with “discovering the root cause” or “learning to love yourself” or “finding your voice” or any of the other talking points commonly referenced in ED recovery circles. The important insights to gain, in my opinion, are the following:

1.) Acknowledging and accepting that you have (or had) an eating disorder, which is a biologically-based brain illness that you did not choose to have and your parents did not cause

2.) Acknowledging and accepting the possibility of relapse

3.) Ability to recognize eating disordered thoughts, feelings, and behaviors in yourself

4.) Understanding the necessity of maintaining full nutrition, every day, for life

5.) Accepting the necessity of maintaining your ideal body weight in order to reduce the risk of relapse

How do you help a person who is recovering from AN to develop insight? It’s tricky, and it varies considerably based upon the patient’s own unique experience of having AN. Unlike full nutrition and weight restoration, insight cannot be thrust upon someone against their will. The patient must be an active participant in the process.

I find it helpful, as a therapist, to have frank conversations with patients and their parents about the biological basis of AN, potential triggers, vulnerability to relapse, and the importance of practicing good self-care. A single conversation at the start of treatment is rarely sufficient. Instead, I integrate these conversations into most of our sessions to help the patient absorb and internalize this information. For the first few months of treatment, these discussions are primarily for the benefit of the parents, as most kids are too malnourished and shut-down to process this information. However, after weight restoration and brain healing, these discussions can have a powerful impact on recovering kids.

Parents often have these insight-building conversations with their recovering teens at home. Often, teens will get defensive, shut down, or lash out when parents bring up these topics. But sometimes kids actually listen!

Many weight-restored patients go through a phase of romanticizing their AN, longing to return to the days of extreme thinness, perpetual motion, and hyper-focus on academics and athletics. While these feelings are understandable and typical at a certain stage of recovery, they need to be counterbalanced with conversations about the negative impact AN had on their bodies, their minds, and their lives. Otherwise, it is all too easy for recovering people to view AN through “rose-colored glasses.”

Bear in mind that the development of insight can take years. Recovered teens who initially presented for treatment at age 13-14 (the typical age of onset) will often show a blossoming of insight around age 17-18, just as they are preparing to leave home for college. This newfound insight is often the result of a variety of factors, including consistent full nutrition, brain healing, normal adolescent developmental processes, maturity, frontal lobe development, and successful therapy. I have worked with many adolescents for whom this happens beautifully, organically, and right on time. These kids go off to college in other states and thrive.

In other cases, however, the timing may be far less convenient. Those who develop AN at 16 or 17 years of age may not be sufficiently recovered to develop the insight needed to manage their illness independently at that magical age of 18. Similarly, who relapse during their junior or senior year of high school may have a setback in the process of insight development and thus may not be ready for independence right after high school.

In some cases, kids are diagnosed in childhood or early adolescence but don’t receive effective treatment until late adolescence. In these cases, it may take even longer for insight to develop if the illness has become entrenched and emotional maturity lags far behind chronological age.

Further, teens who have suffered through months or years of ineffective treatment may have built up an arsenal of bogus myth-based insight that has nothing to do with the reality of their illness. For example:

• “I developed AN as a way to cope with feeling out of control in life.”

• “I have to want to get better on my own. I have to do this for myself.”

• “Re-feeding doesn’t help us discover the root cause of your illness.”

• “I am enmeshed with my parents and this is keeping me sick. I need to become more independent.”

These myth-based “insights” very often result in parental alienation and protracted illness.

As you can see, all insight is not equal. The insights worth having are those that are based in empirical science, those that empower parents to help their offspring recover, and those that serve to help patients achieve and maintain their physical and mental health while living a full and meaningful life.

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After Weight Restoration: Envisioning Recovery

In making a post weight-restoration recovery plan, I find it helpful to envision what full recovery will look like for this particular individual, and then break it down into small steps to help her achieve these ends. In my opinion, full recovery from AN involves all of the following:

• Ability to feed oneself the appropriate quantity, quality, and balance of nutrition.
• Ability to maintain one’s optimal body weight with an age-appropriate level of independence.
• Ability to accept and tolerate one’s body size, shape, and weight.
• Complete absence of eating disordered behaviors such as fasting, food restriction, binge eating, and purging.
• Ability to enjoy regular physical activity without compulsion.
• Engaging fully in all aspects of life, including school, family life, social life, and recreational activities. For older patients, this may also include employment, dating and romantic relationships.
• Freedom from constant preoccupation with food, weight, and body image.
• Mindful awareness of one’s predisposition towards AN and ability to avoid or manage potential triggers.

In my opinion, full recovery from AN does not necessarily involve any of the following:
• Ability to eat intuitively
• Ability to eat spontaneously
• Ability to eat sweets or “junk food”
• Return to the eating habits one had prior to the onset of the eating disorder
• Loving one’s body
• Not caring about one’s weight at all
• Complete absence of eating disordered thoughts
• Freedom from monitoring (for example, going for long periods without being weighed)

Of course, it would be wonderful if a person recovered from AN could do any or all of the above. If one of my patients does one of these things, I view it as a very positive sign, an indication that a person has reached a new level of freedom from AN. Parents of recovering kids often long for them to walk into the kitchen and grab a handful of chips, eat candy with abandon, or ask to go out for ice cream.

If a person in recovery does these things, that is fantastic, and it should be celebrated! Often, these things happen naturally after a year or two or three of weight restoration. But these things may not be realistic for some people with a history of AN. And if these things never happen, that is OK.

What is most important, in my opinion, is for a person in recovery to do whatever it takes to live a rich, happy, healthy, fulfilling and productive life. This is what recovery means to me.

Sometimes parents and clinicians worry that a patient’s avoidance of sweets, or inability to eat intuitively, or adherence to a structured plan of meals and snacks is “part of the disorder.” This may be true. But this is not inherently a bad thing.

Some recovered people may never want to be weighed again, because it reminds them of what it was like when they were ill. Some recovered people may resent having to eat three balanced meals every day, or not being able to diet like their friends, or not getting to participate in fasting for religious reasons like their families. Sometimes they just long to be “normal.” These feelings are completely understandable. However, this does not change the reality that people recovered from AN often have special needs which require them to be careful about their health in ways that other people are not. We cannot rewind time to the days before the illness began. We should not pretend AN never happened.

I find it helpful to assess a person’s stage of recovery using the following question:

“Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while _______________________.”

Then, fill in the blank with the issue in question to help determine whether it is in the patient’s best interest to accept it or change it.

For example:
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while also getting weighed every week at the doctor’s office? YES
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while being 5 pounds underweight? NO
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while never eating dessert or snack foods? YES
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while restricting dietary fat or carbohydrates? NO
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while being tormented by frequent thoughts about food and weight? NO
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, while wishing she had thinner legs and having occasional thoughts about restricting food? YES
• Can this person maintain good physical and mental health, and live a meaningful, productive, independent life, without being able to eat intuitively or spontaneously? YES

Keep in mind that accepting something is not the same as liking it, and acceptance does not mean abandoning hope that things will improve. Rather, acceptance is about acknowledging reality and embracing it without judgment, while doing what works, in this moment, to maintain wellness.

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After Weight Restoration: What’s Next?

Scientific research has established that consistent full nutrition and weight restoration are the essential first steps in recovery from Anorexia Nervosa (AN). A recent study by Accurso and colleagues – the subject of my previous blog post – demonstrated that weight gain is a catalyst for broader recovery in Anorexia Nervosa (AN). The necessity of normalizing eating patterns and restoring weight applies to all patients with AN: male and female, young and old, chronic and acute, inpatient and outpatient, mild and severe. While the task of supporting weight restoration in a patient with AN is daunting and exhausting, it is very straightforward.

After weight restoration, the next steps in recovery are less certain, more varied, and highly dependent on individual differences. The best way forward is often ambiguous for someone who is well-nourished but deeply entrenched in the illness. For some people with AN, weight restoration alone is sufficient to bring about full remission. But for others, weight restoration is merely the first step in a long journey towards wellness. Unfortunately, there is little scientific research to guide us in terms of how to help people with AN who are weight-restored but still suffering mentally.

Parents are often quite adept at determining what their child needs in order to move forward. For this reason, parents continue to be essential participants on their loved one’s treatment team even after her weight is restored. Although their role on the treatment team may change a bit, and their degree of involvement may be modified, they continue to be their loved one’s greatest resource in recovery.

After weight restoration, I collaborate with the patient and her family to figure out how we can work together to support her towards full recovery. This typically involves a written treatment plan that we all agree upon. I find it incredibly helpful to have a written treatment plan, as this eliminates confusion and keeps everyone on the same page, working towards common goals.

It is not always clear what the patient needs next, so treatment after weight-restoration is very often a process of trial and error. We create a plan, implement it, and see how the patient does. If she moves forward in recovery, fantastic! If she remains stuck or regresses, we reassess her situation and modify her plan based on lessons learned from her struggles.

My next few blog posts will examine various aspects of treatment and recovery for weight-restored patients with AN. Please feel free to leave a comment if there are any particular issues you’d like me to cover on this topic in my next series of posts.

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End of Treatment Outcomes for Patients with Mood Disorders

Since opening my practice in 2009, I have evaluated 30 patients with mood disorders. Former patients who attended at least one treatment session with me following their evaluation were included in this sample. Patients who are currently in treatment with me were not included in this sample. As you read, please bear in mind that these data are specific to my practice and my patients, and should not be generalized to other therapists or other patient populations.

The 21 patients in this sample had a range of different mood disorder diagnoses. The most common diagnosis was Major Depressive Disorder (43%; n = 9). Other mood disorder diagnoses included Mood Disorder Not Otherwise Specified (19%; n = 4), Depressive Disorder Not Otherwise Specified (14%; n = 3), Bipolar Disorder (14%; n = 3), and Dysthymia (10%; n = 2). Approximately one quarter of the sample (24%) was male.

Patients ranged in age from 12 to 59, with a median age of 21. Most of these patients had been suffering from their mood disorder for years before beginning treatment with me, and most had received some sort of psychological or psychiatric treatment in the past. Duration of illness prior to intake ranged from 1 month to 35 years, with an average duration of 8.4 years. These figures reflect the length of time since symptoms began, which is usually substantially earlier than diagnosis.

Many mood disorders, such as Major Depressive Disorder and Bipolar Disorder, tend to be episodic, characterized by periods of remission and periods of relapse. Thus, the “duration of illness prior to treatment” figures reflect the total length of time from the onset of first symptoms to the initial session with me. Many patients had periods of mild or absent symptoms and good functioning in between mood disorder episodes.

Most of the patients in this sample had relatively severe forms of mood disorders. Thirty-eight percent of them (n = 8) had been hospitalized for a suicide attempt, suicidal gesture, or related psychiatric issue prior to beginning treatment with me, and many of these individuals had been hospitalized multiple times. Fourteen percent of patients (n = 3) had to be hospitalized during the course of their treatment with me.

This sample was ethnically diverse, comprised of 43% White Hispanic, 43% White Non-Hispanic, 10% multi-racial, and 4% Black Hispanic. The majority of patients in this sample (86%; n = 18) paid a reduced fee for my services; only 14% (n = 3) paid my full rate. Thus, most of these patients were of lower socio-economic status and/or were college students responsible for supporting themselves.

Approximately half of the sample (52%; n = 11) had a comorbid psychiatric disorder. The most common comorbid diagnoses were Anxiety Disorder Not Otherwise Specified (14%; n = 3) and Eating Disorder Not Otherwise Specified (14%; n = 3).

The patients in this sample received various types of treatment, depending on their age and symptoms. Nearly half of the patients in this sample (48%; n = 10) received Cognitive-Behavioral Therapy (CBT). Patients whose illnesses were characterized by impulsivity and self-harm received a Dialectical Behavior Therapy (DBT) skills-based approach (38%; n = 8). Patients with milder symptoms and social difficulties received supportive counseling focused on self-care and interpersonal relationships (14%; n = 3). Sixty-two percent of patients (n = 13) were also seeing a psychiatrist and taking psychotropic medication during their treatment with me.

The level of family involvement in a patient’s treatment varied based upon his or her age, symptoms, and preferences as well as logistics. In this sample, 43% (n = 9) of patients had no family involvement, 19% (n = 4) had a low level of family involvement, 19% (n = 4) had a moderate level of family involvement, and 19% (n = 4) had a high level of family involvement.

I require the parents of all patients under 18 to be fully informed and actively involved in their child’s treatment. Therefore, all patients under 18 in this sample had moderate to high degrees of family involvement in treatment. This means that the patient’s parents participated fully in the evaluation and treatment planning, and participated in a portion of most therapy sessions (e.g., the last 10 minutes of each session) for the purposes of providing feedback, setting goals, and evaluating progress. These parents also had regular access to me via phone and email for the purpose of sharing information about their child and asking questions. For patients over age 18, family members were involved as appropriate, as needed, and as requested by the patient. For example, many college-aged patients had parents involved in their treatment, particularly when it came to issues of psychiatric consultation and hospitalization.

Patients in this sample attended between 1 and 96 sessions, with a mean of 19 sessions. Duration of treatment ranged from 1 month and 39 months, with a mean duration of 7 months. In other words, the typical mood disorder patient attended 19 sessions over the course of 7 months.

Twenty-nine percent of patients (n = 6) completed treatment and 38% (n = 8) quit treatment prematurely. I referred twenty-four percent of patients (n = 5) to other treatment providers who could better meet their needs, and 9% of patients (n = 2) moved to other geographic locations during their treatment and were referred to other providers near their new homes.

Patients who completed treatment attended between 1 and 96 sessions, with an average of 23 sessions. Duration of treatment for those who completed treatment ranged from 1 to 39 months, with an average duration of 11 months. Thus, it typically took approximately 23 sessions over the course of 11 months to complete treatment.

Each patient was given an end-of-treatment rating which describes their state as of their final session with me, regardless of the reason why treatment ended.

• Patients were classified as being in “full remission” if they had not experienced any symptoms of their mood disorder within the past two weeks, and their social / occupational / academic functioning were good.

• Patients were classified as having made “significant progress” if their mood disorder symptoms over the past two weeks were substantially less severe, less frequent, and less intense than at intake, but were still occurring, and their social / occupational / academic functioning were relatively good.

• Patients were classified as having made “some progress” if their symptoms over the past two weeks were somewhat less severe and less frequent than at intake, and if their social / occupational / academic functioning were fair.

• Patients were classified as having made “no progress” if the frequency, intensity, and duration of symptoms had not improved since intake, and social / occupational / academic functioning had not improved since intake.

• Patients were classified as “regressed” if their symptoms over the past two weeks were more severe or more frequent than at intake and their social / occupational / academic functioning had declined since intake.

Of the patients who completed treatment, 83% (n = 5) achieved full remission from their mood disorder and 17% (n = 1) made significant progress. Of the patients who quit treatment prematurely, 25% (n = 2) had made significant progress by their last session with me, 63% (n = 5) had made some progress, and 12% (n = 1) had made no progress. Among the patients whom I referred to other providers, 40% (n = 2) regressed during their treatment with me, 20% (n = 1) made no progress (n = 1), 20% (n = 1) made some progress, and 20% (n = 1) made significant progress.

In my next post, I will discuss factors that are correlated with treatment completion and good outcome in these mood disorder patients.

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Correlates of Treatment Outcome for Patients with BN & EDNOS

My previous post described the treatment outcomes of my 21 former patients with diagnoses of Bulimia Nervosa (BN) or Eating Disorder Not Otherwise Specified (EDNOS). Treatment was very successful for these patients, with 100% of those who completed treatment (n = 7) achieving full remission. However, the attrition rate was very high, with two-thirds of patients (n = 14) discontinuing treatment prematurely for various reasons. Nineteen percent (n = 4) of patients were referred to other providers or treatment settings because I was unable to meet their needs, 5% (n = 1) moved to another geographic area, and 43% (n = 9) quit before finishing treatment.

Given that treatment completion always led to full remission, attrition appears to be the biggest challenge for this population. Therefore, my post will focus on the differences between those who completed treatment and therefore achieved full remission (aka “treatment completers”) versus those who did not (“treatment non-completers”).

Neither age at intake nor duration of illness before intake predicted treatment outcome. Both treatment completers and treatment non-completers averaged approximately 19 years old at intake, with an average duration of illness of 4.5 years.

Patients who completed treatment and achieved full remission did so through a variety of treatment modalities: 43% (n = 3) received individual therapy with no family involvement, 29% (n = 2) received Family-Based Treatment (FBT), 14% (n = 1) received individual therapy with a high level of family involvement, and 14% (n = 1) received individual therapy with moderate family involvement.

Patients receiving FBT (n = 7) were significantly less likely than those receiving individual therapy to quit treatment prematurely. Only 14% of patients receiving FBT (n = 1) quit treatment prematurely. I referred 43% of them (n = 3) to other treatment settings due to my inability to help them progress in treatment. Twenty-nine percent (n = 2) completed treatment with me and 14% (n = 1) moved to another geographic area and continued her treatment there.

Of the 14 patients who received individual therapy, 57% (n = 8) quit treatment prematurely. The remainder of patients either completed treatment and achieved full remission (36%; n = 5) or were referred to other treatment settings (7%; n = 1).

Interestingly, treatment completers did not differ from treatment non-completers on duration of treatment or on number of sessions attended. For treatment completers, duration of treatment ranged from 1-38 months, with an average duration of 10 months. For treatment non-completers, duration of treatment ranged from 1-28 months, with an average duration of 10 months. Treatment completers attended an average of 15 sessions, while treatment non-completers attended an average of 20 sessions. Thus, it appears that treatment completers did not necessarily remain in treatment longer, but rather reached remission more quickly. Anecdotally, I recall that a number of patients who quit treatment prematurely actually did quite well in their first 6-9 months of treatment and nearly reached remission, but then began to regress, got discouraged, and quit.

Rates of treatment completion and treatment outcome differed based on diagnosis. Amongst patients with BN, 22% (n = 2) completed treatment and achieved full remission, while 44% (n = 4) made significant progress prior to discontinuing treatment. For patients with EDNOS, 42% completed treatment and achieved full remission, while 17% (n = 2) made significant progress prior to discontinuing treatment.

Prior history of untreated Anorexia Nervosa (AN) was associated with treatment dropout and poor outcome. Only 18% (n = 2) of those with a prior history of AN completed their BN/EDNOS treatment with me, and both of those patients had been successfully treated for AN years before. None of the patients with a prior history of untreated AN completed their treatment with me.

Patients with a co-morbid disorder were much less likely to complete treatment. While two-thirds of patients in this sample (n = 14) had a co-morbid disorder, only 29% of them (n = 4) completed treatment and achieved remission.

Taking psychotropic medication during treatment was not related to treatment completion. Thirty-six percent of those who took medication during treatment (n = 4) completed treatment and achieved full remission, compared with 30% (n = 3) of those who did not take medication during treatment.

This sample of patients was 71% Caucasian (n = 15), 24% Hispanic (n = 5), and 5% multi-racial (n = 1). Hispanic patients were much more likely to complete treatment and achieve remission than Caucasian patients. Eighty percent (n = 4) of Hispanic patients in this sample completed treatment and achieved remission, compared with only 20% (n = 3) of Caucasian patients.

I work on a sliding fee scale, offering reduced rates based on patient’s ability to pay. Those who paid my full rate were more likely to complete treatment and achieve remission compared with those who paid a reduced rate. Forty-six percent of those who paid my full rate completed treatment (n = 6), compared with 25% of those who paid a reduced rate (n = 2).

Individuals with a history of intensive eating disorder treatment were less likely to complete treatment than those without such a history. Amongst treatment non-completers, 50% (n = 7) had been hospitalized for their eating disorder or a related psychiatric issue, 21% (n = 3) had a history of residential treatment, and 21% had been in partial hospitalization, day treatment, or intensive outpatient programs. Amongst treatment completers, 29% (n = 2) had a prior history of hospitalization, 14% (n = 1) had a history of residential treatment, and none had a history of partial hospitalization, day treatment, or intensive outpatient treatment. The need for hospitalization during treatment with me was not related to treatment completion or treatment outcome.

In sum, the only variables that were related to treatment completion and remission were diagnosis of EDNOS and payment of my full fee for services. The following variables were associated with treatment non-completion: presence of a comorbid diagnosis, history of untreated AN, and prior history of intensive eating disorder treatment. Surprisingly, neither age at intake, duration of illness before intake, type of treatment received, number of sessions attended, duration of treatment, nor need for hospitalization during treatment were related to treatment completion.

These findings are specific to my practice and my patients, and are not intended to be generalized to other clinicians or other populations.

My next post will explore similarities and differences in treatment outcome among patients with AN, BN, and EDNOS.

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End of Treatment Outcomes for Patients with Bulimia Nervosa & EDNOS

Since I opened my practice in 2009, I have evaluated 10 patients with a diagnosis of Bulimia Nervosa (BN) and 16 patients with a diagnosis of Eating Disorder Not Otherwise Specified (EDNOS). All patients with a diagnosis of BN or EDNOS who attended an evaluation and at least one treatment session with me, and who are no longer in treatment with me, were included in this sample. Patients I evaluated who did not attend any treatment sessions with me were not included in this sample. Patients who are currently in treatment with me were not included in this sample either. Thus, the sample I will be describing includes a total of 21 patients: 12 with EDNOS and 9 with BN.

As you continue to read, bear in mind that these results are specific to my practice and my patients. These data should not be generalized to other clinicians or other patients.

All patients in this sample were female. Age at intake ranged from 14 – 28, with an average age of 19. Two thirds of the patients (n = 14) had a comorbid disorder, with the most common being Major Depressive Disorder. Sixty-two percent of patients (n = 13) paid my full rate for services, while 38% (n = 8) paid a reduced rate.

For the purpose of calculating duration of illness, the onset of illness was defined as the period of time in which the patient began engaging in behavioral symptoms of eating disorders (e.g., restricting, bingeing, compulsive exercise, purging) as reported by the patient and/or parents. This is an important point to clarify, as symptoms of the illness typically begin long before a diagnosis is made. Length of illness before intake varied considerably, ranging from 6 months to 15 years, with an average of 4.5 years.

Over half of the patients in this sample (n = 11) had a prior history of Anorexia Nervosa (AN). Some of them had been diagnosed with and treated for AN, while others met criteria for AN at one point but were not treated until their illness morphed into BN or EDNOS.

The patients in this sample with EDNOS (n = 12) presented with a range of different symptoms. Half of the patients (n = 6) struggled with some combination of restricting, bingeing, and purging. One quarter of patients (n = 3) presented primarily with binge eating. Seventeen percent (n = 2) had Type I diabetes and withheld insulin (known as “diabulimia”). Eight percent (n = 1) presented with body image distress associated with a history of AN.

Ninety percent of these patients (n = 19) had a history of some type of psychological treatment prior to meeting with me. The majority had been in individual therapy for their eating disorder at some point. Forty-three percent of the sample (n = 9) had been hospitalized for their eating disorder or for a related psychiatric issue prior to beginning treatment with me. Nineteen percent (n = 4) had a history of residential eating disorders treatment and 24% (n = 5) had a history of partial hospitalization, day treatment, or intensive outpatient treatment.

One-third of the patients in this sample (n = 7) were treated with Family-Based Treatment (FBT). The remaining two-thirds (n = 14) were treated with individual Cognitive-Behavioral Therapy (CBT), with varying degrees of family involvement. Of the individual therapy patients, 21% (n = 3) had a high level of family involvement, meaning that a family member participated in part of each session, shared information and impressions frequently, was kept apprised of weekly goals and progress, and maintained regular phone and email contact with me. Twenty-nine percent of individual therapy patients (n = 4) had a moderate level of family involvement, meaning that a family member participated in some sessions and had occasional phone and email contact with me. Seven percent of individual therapy patients (n = 1) had a low level of family involvement, meaning that a family member attended one or two sessions, and 43% of individual therapy patients (n = 6) had no family involvement whatsoever.

Parents were the most common family members involved in the patient’s treatment. However, some patients had boyfriends, husbands, stepparents, grandparents, siblings, aunts, and uncles involved depending on their living situation and individual circumstances. Whenever family members were involved with treatment, the focus was on providing them with psycho-education about eating disorders and enlisting them as sources of practical and emotional support for the patient at home. Family members were coached in providing meal support and in assisting their loved one in refraining from eating disorder behaviors such as bingeing and purging.

For patients who received individual therapy, my approach was primarily cognitive-behavioral (CBT). In addition, many patients were taught Dialectical Behavior Therapy (DBT) skills such as distress tolerance and emotion regulation, as well as Acceptance and Commitment Therapy (ACT) principles such as thought defusion and values-based living.

Patients in this sample attended between 2 and 54 sessions, with an average of 18 sessions. Duration of treatment with me ranged from 1 month to 38 months, with a mean of duration of 10 months. Slightly more than half of the patients (n = 11) took psychotropic medication while in treatment with me. Three patients had to be hospitalized over the course of their treatment with me.

All patients were assigned an end-of-treatment status describing how they had progressed as of their final session with me. Outcomes were defined as follows:

1. Patient must meet ALL of the following criteria to be classified as in full remission:
a.) Patient gets regular menstrual periods.
b.) Patient is medically healthy, with good vital signs and blood work.
c.) Patient is completely abstinent from eating disorder behaviors, including restricting, binge/purge behaviors, laxatives, and diet pills.
d.) Patient eats regular, balanced meals most of the time or always, as reported by patient and parent (when applicable)
e.) No more than mild preoccupation with food, weight, body image, or fear of weight gain

2. Patient is classified as in physical remission if she meets criteria a, b, c, and d under full remission, but does not meet criteria e under full remission. Essentially, a patient in physical remission is physically well and free of eating disorder behaviors, but continues to be very distressed with her body image and/or preoccupied with thoughts about food and weight.

3. Patient is classified as having made significant progress if:
a.) Patient has made significant improvement in dietary habits (e.g., eats regular, balanced meals and snacks) as reported by patient and parents (when applicable)
b.) Patient is medically healthy, with good vital signs and blood work
c.) Frequency of eating disorder behaviors (e.g., restricting, bingeing, purging) has been reduced to once per week or less.

4. Patient is classified as having made some progress if:
a.) Patient has improved dietary habits somewhat since intake, but needs more improvement
b.) Patient has reduced the frequency of eating disorder behaviors (e.g., restricting, bingeing, purging) since intake, but still engages in these behaviors more than once per week.

5. Patient is classified as having made no progress if she has not improved dietary habits and/or has not reduced the frequency of eating disorder behaviors.

6. Patient is classified as regressed if she meets ANY of the following criteria:
a.) Dietary intake has declined since intake (e.g., more skipped meals, less variety, less nutritional balance)
b.) Frequency of binge/purge behaviors has increased since intake
c.) Patient has become medically unstable

Thirty-three percent of patients (n = 7) completed treatment, 43% (n = 9) quit treatment prematurely, 19% (n = 4) were referred to other providers or treatment settings because I was unable to meet their needs, and 5% (n = 1) moved to another geographic area during treatment.

One-hundred percent of the patients who completed treatment (n = 7) reached full remission. For those who completed treatment, known henceforth as “treatment completers,” duration of treatment ranged from one month to 38 months, with an average duration of 10 months. Number of sessions attended for treatment completers ranged from 3 – 45, with an average of 15 sessions. In other words, the typical patient with BN or EDNOS who completed treatment achieved full remission in 15 sessions over the course of 10 months.

Unfortunately, the attrition rate was very high, so these treatment completers comprised only one-third of the full sample. Of the 14 patients who discontinued prematurely, 43% (n = 6) made significant progress, another 43% (n = 6) made some progress, 7% (n = 1) made no progress, and 7% regressed (n = 1).

My next post will involve a detailed examination of the differences between patients who completed treatment and reached full remission versus those who discontinued treatment prematurely and did not reach full remission.

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As Serious As Cancer

There are several parallels between Anorexia Nervosa (AN) and cancer. Both diseases are severe and potentially fatal – the mortality rate of AN is similar to that of the most common form of childhood leukemia. Both can become chronic illnesses characterized by periods of remission and periods of relapse. Early, aggressive intervention is crucial in the treatment of AN as well as the treatment of cancer. Both diseases will grow and metastasize if left unchecked. Neither cancer nor AN is the patient’s choice or the parents’ fault. Chemotherapy is an aversive, painful treatment with unwanted side effects. The same can be said of re-feeding and weight restoration in AN – it is extremely anxiety provoking and difficult for the patient, yet it is necessary in order to eradicate the disease. Patients with AN, like patients with cancer, require a tremendous amount of help and support from caregivers for long periods of time.

Blogger Cameron Von St. James, the husband of Mesothelioma survivor Heather Von St. James, wrote the following essay about caring for his wife during her battle with cancer. I think it may resonate with caregivers of patients with AN.

The Hardest Battle Of Our Lives
by Cameron Von St. James

When my wife and I walked into that doctor’s office on November 21, 2005, we didn’t realize that our lives were about to change forever. Until then, we were your average couple. We both worked full-time jobs and had welcomed our first and only child into the world just 3 months prior. As we sat in the doctor’s office together, we watched our lives transform into a chaos and uncertainty before our very eyes. The doctor read the diagnosis: malignant pleural mesothelioma. Cancer, and an extremely deadly one at that. I knew we were in for a long, difficult struggle.

The doctor told us about treatment options. We could go to a local university hospital, a regional hospital that didn’t even have a specialist to deal with my wife’s form of cancer, or Dr. David Sugarbaker in Boston, a renowned specialist in the treatment of mesothelioma. My wife couldn’t even answer, she was so shocked and terrified. She turned to me as if to cry for help. I answered her silent plea by telling the doctor, “Get us to Boston!” That decision turned out to be one of the most important I’ve ever made in my life.

Being a caregiver my wife was extremely taxing and difficult, but it’s a job that I knew I had to do to the best of my ability. I knew I had to be strong for her and be her rock. Inside, though, my life was in turmoil. My wife had to quit her job and required more and more care each day. As a result, I was working full-time, taking care of our infant daughter, and also taking care of my beloved wife too, whisking her to one doctor appointment after another, making travel arrangements to Boston, and making her comfortable at home. It was a full schedule and there were so many times when I felt like giving up, but I knew I needed to press on.

During this time, I dealt with a multitude of fears that will never leave me. Medical bills piled up. I watched the love of my life endure pain and sickness that no one should ever have to endure. I feared what would happen to our daughter if my wife didn’t survive through this. Would she have to spend the rest of her life without a mother? And with a father that was broke because of all the medical bills? It was the hardest, most painful time I’ve ever lived through, and more than once the stress and pressure forced me to the ground in tears. I had bad days, but I never let my wife see my in my moments of weakness. I knew that she needed me to be strong, and I did my best to give her that.

After months of surgery, radiation and chemotherapy treatments, Heather is cancer-free. She beat mesothelioma against all odds, and I am so proud of her. Two years after her diagnosis, I enrolled in school full-time to study Information Technology. I graduated with honors and am thankful to have been given the stage to give the speech at my graduation. It was there that I was able to see the lessons I learned and communicate my gratitude for the fact that my wife had beat cancer.

My own lessons stay with me even today. I learned that I’m strong enough to take care of someone I love, even if it is scary and often painful. I learned to use my own stubbornness to work to my advantage. Most importantly, I learned that time is precious to us all and we should spend it with the people we love so much. It’s seven years later and Heather is cancer free, and we continue to raise our beautiful daughter with the lessons we both learned. It is our hope that our story of triumph over cancer can inspire others in their own battles.

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A Seat at the Table: Understanding and Helping the Siblings of Eating Disorder Patients

I feel honored to serve on the Professional Advisory Panel for FEAST, a nonprofit organization which provides support and information to the parents and families of people with eating disorders. Last weekend, I had the privilege of presenting at the second annual FEAST conference in Alexandria, VA. I spoke to a group of parents about understanding and helping their other children while also caring for their eating disordered child. Below are some of the major points from my presentation.

Eating disorders can impact the patient’s siblings from various angles:

• Through their parents. When a child is ill with an eating disorder, her siblings often receive less attention from their parents. The parents may be physically absent from the home, traveling to faraway treatment centers and attending many different appointments locally. Parents often feel worried, stressed, and irritable, and these emotions can easily spill over into their relationships with their other children.

• By impacting family life. Family meals with an eating disordered person can be tense or explosive. For this reason, siblings may begin to dread family meals or avoid them altogether. Family trips may be cancelled or ruined by the eating disorder. The financial burden of ED treatment impacts the entire family, including siblings.

• Through their social environment. Parents may not be available to drive siblings to their lessons, sports events, and social activities when they are spending long hours preparing and supervising meals and driving the ill sibling to appointments. Siblings may feel embarrassed to invite friends over when their ill sister or brother is acting particularly bizarre. Siblings may have to deal with gossip from friends and neighbors. They may feel conflicted about telling their friends about their family’s situation, and they have to deal with the stigma of mental illness.

• Through the change in eating habits. Parents are encouraged to serve their anorexic children high-calorie foods to restore their weight. Sometimes siblings over-indulge in these foods and gain unneeded weight.

• Through their genes. Biological siblings of eating disorder patients are 10 times more likely to develop an eating disorder compared to the general population. Additionally, siblings of eating disorder patients may inherit genes that predispose them to other psychiatric illnesses, including depression, OCD and other anxiety disorders, substance abuse, ADHD, and autism.

Brothers and sisters may experience a variety of emotions while their sibling is ill with an eating disorder. They may worry that their sibling will get sicker or die. They may grieve for the loss of their sibling’s true personality while she is consumed by the illness, and they may miss her terribly if she is away from home for a lengthy hospitalization or residential treatment stay. They may worry about their own risk for developing an eating disorder. They may feel angry at their sibling for putting the family through hell or making mealtimes miserable. They may feel jealous because of all of the attention their ill sibling is getting. Siblings may react by withdrawing from friends and family members, having difficulty at school, or acting out. They may feel sad or hopeless. They may have difficulty concentrating. Very young siblings may manifest their distress through physical symptoms (e.g., tummy aches, trouble sleeping).

It may not be possible for parents to shield siblings completely from the impact of the eating disorder. However, there are some steps that parents can take to minimize the damage and help siblings cope:

• Immediately upon diagnosis, provide siblings with age-appropriate information on their sibling’s diagnosis, symptoms, and treatment. Explain that the disorder is biologically-based and that the child did not chose to have it. I have a Sibling reading list, as well as a list of Q & A for siblings of AN patients. Even preschool-age siblings can understand a few basic points: “Your sister has a disease in her brain called anorexia which has made her very sick. She is acting different because of her sick brain; it is not her fault. We need to help her get better. Mommy and Daddy will be very busy taking care of her, but we still love you very much.”

• Be frank with siblings about the seriousness of the eating disorder, including the possibility of death. This honesty helps siblings understand why it is so important that the family intervenes immediately and aggressively, and why other activities have to take a back seat for now.

• Be honest with siblings about the reality of dealing with the eating disorder. Acknowledge that, for a period of time, the whole family will be under stress, family life will change, and you may not be able to spend as much time with them.

• Bring siblings to some Family-Based Treatment (FBT) sessions so that the therapist can explain the eating disorder to them, describe the treatment process, answer their questions, and tell them how they can support their ill sister or brother.

• Make a point of scheduling one-on-one time with each sibling and talking with them about their lives apart from the eating disorder.

• Talk with siblings about their feelings and reactions to the eating disorder. Let them know that it is totally normal and understandable for siblings to feel worried, angry, jealous, resentful, or sad in this type of situation.

• Ensure that siblings remain in a support role, rather than taking on a parent’s role. Lock and LeGrange, authors of the FBT manual, call this process “maintaining intergenerational boundaries.” Siblings can help their ill sister by providing her with distraction before, during, and after meals, by being good listeners and providing empathy, and by engaging her in normal sibling activities. Siblings can help by taking over kitchen chores that the eating disordered person is not well enough to do, such as setting the table or doing the dishes. Do not involve siblings in the actual process of re-feeding or supervising meals, as this can put them in a delicate position of being torn between “loyalty” to their ill sister and the responsibility of reporting ED behaviors to their parents.

An eating disorder can also impact siblings in a positive way. For example, they may grow closer to their ill sibling and value her more after almost losing her. They may feel needed and important in the process of supporting their ill sister or brother. Siblings may become more aware of EDs and other psychiatric illnesses in their friends and try to intervene whenever they see concerning behaviors. They may have improved body image after witnessing the disturbing body image distress of their ill sibling. Often, siblings benefit from having more frequent family meals and structured eating habits. They may grow and mature from the experience, developing more autonomy when parents’ focus is on the eating disorder treatment. Siblings benefit from strengthened parental unity. If a sibling develops an eating disorder or another illness in the future, their parents tend to intervene immediately and are much more equipped to deal with it.