Posted on

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.

Posted on

My Rebuttal to “Surefire Ways”

An essay written by a clinical social worker titled “Surefire Ways to Give Your Kid an Eating Disorder” has received a lot of attention in the blogosphere over the past week, including brilliant rebuttals by Laura Collins and Carrie Arnold. I wrote a reply to this essay on Ms. Lewis’ blog, but unfortunately she did not post it. I am not sure why my reply wasn’t posted, but I did notice that there are no posted replies from clinicians who strongly disagreed with the essay. Therefore, I have chosen to post my reply on my own blog. If you have attempted, unsuccessfully, to post a reply on Ms. Lewis’ blog, please feel free to post here. As a general policy, I post all replies except spam.

As a psychologist specializing in the treatment of eating disorders in children and adolescents, I was profoundly disappointed to read this essay. I have grown accustomed to hearing myths about eating disorders from lay people and from the media, but I hold professionals to a higher standard. Professionals who write articles for public consumption have an obligation to be accurate, up-to-date, and straightforward.

Ms. Lewis’s essay confuses the common problems of body dissatisfaction, perfectionism, and poor self-esteem with the psychiatric illnesses called eating disorders. Without question, parents have a major influence on their child’s self-esteem and body image, for better or for worse. Parents influence their children’s development in a variety of ways, and bad parenting can cause tremendous pain to impressionable children. However, there is no reliable evidence to indicate that parents cause eating disorders. The Academy for Eating Disorders recent position paper on The Role of the Family in Eating Disorders concluded that “There appears to be no consistent structure or pattern of functioning in families with a member who suffers from an eating disorder; rather, eating disorders evolve in a multiplicity of family contexts.”

For decades, psychologists and psychiatrists theorized that cold, withholding parents caused their children to develop autism, that erratic parenting caused schizophrenia, and that overbearing or perfectionistic parenting caused eating disorders. More recently, these theories have been disproven. While the precise causes of these illnesses are unknown, we do know that these are highly heritable, biologically-based brain disorders that are definitively not caused by any particular type of parenting.

A parent who is a “neat freak” – who uses hand sanitizer before every meal and requires his child to clean his room thoroughly twice a week – cannot give his child OCD. A child cannot acquire a parent’s mental illness by imitating his behavior.

By stating that encouraging perfectionism, withholding emotionally, and using food for rewards and punishments are “surefire ways to give your kid an eating disorder,” Ms. Lewis reveals her ignorance about her own area of expertise. She conflates body dissatisfaction with eating disorders and thereby inadvertently trivializes the most deadly of all psychiatric illnesses.

I respectfully urge Ms. Lewis to educate herself on the most recent scientific knowledge about eating disorders and to revise her essay to reflect this knowledge.

Posted on

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.

Posted on

Navigating Phase III

Last week, I blogged about navigating Phase II of Maudsley Family-Based Treatment (FBT). Today I present a roadmap for Phase III, which is equal to Phase II in its importance as well as its ambiguity.

A common but ill-informed criticism of FBT is that it only addresses eating and weight. This is a misconception. Phase I focuses on establishing normal eating habits and restoring normal weight and Phase II focuses on helping the patient eat on her own in an age-appropriate way, but Phase III has nothing to do with food or weight at all. A wonderful thing about FBT is that the life-threatening eating disordered behaviors are treated first, which frees up the therapist, the patient, and the family to focus on any remaining issues in Phase III.

The goal of Phase III is establishing a healthy adolescent identity. An eating disorder engulfs an adolescent’s identity, creates extreme stress for the entire family, and strains the relationships between family members. Phase III is about restoring healthy, age-appropriate family relationships and returning the adolescent to normal life. Anything that stands in the way of these goals must be dealt with in order for the patient to recover fully.

Phase III begins when the patient is able to eat normally, with age-appropriate independence, while maintaining a healthy weight and not engaging in any eating disorder behaviors. Essentially, once all food issues have been resolved, the patient is ready for Phase III.

The authors of the FBT manual (Locke & Le Grange, 2001) advise that Phase III entails a handful of sessions scheduled several weeks apart. In my clinical experience, many patients do quite well with just a few sessions in Phase III, but others continue to struggle with anxiety, depression, body image, perfectionism, or other problems. Therefore, I offer to provide patients and families with an extended version of Phase III when I believe it is warranted. Length of illness, severity of illness, and co-morbid conditions all influence whether a patient may benefit from more treatment than the FBT manual prescribes.

In my practice, Phase III typically addresses the following issues:

1.) Returning the patient to normal development.

An eating disorder can interrupt normal adolescent development. Often, when a patient enters Phase III, she is at the same developmental level as when the illness first began. Phase III entails helping the patient develop the maturity and social-emotional skills that were lost as a casualty of ED. Depending on the age of the patient, this may entail returning to sports or other activities, getting a driver’s license, going out with friends, dating, returning to college, or developing new hobbies and interests.

2.) Re-establishing healthy relationships amongst family members.

An eating disorder can wreak havoc on family life. It is not uncommon for spouses to have major marital conflict emerge as a result of ED. Siblings may feel neglected by their parents or jealous of the patient. The patient and her parents may develop a codependent relationship over the course of treatment, which can be advantageous in the first two phases, but must be corrected in Phase III so that the patient and parent can each return to their own lives. Healthy boundaries amongst family members can be damaged by ED, and it is crucial for these boundaries to be re-established at the end of treatment.

3.) Addressing any remaining psychological symptoms of the eating disorder.

There are numerous psychological symptoms related to an eating disorder. For example, body dysmorphia, perfectionism, poor self-esteem, anxiety, and cognitive rigidity may predispose people to AN and perpetuate the illness once it has begun. For many patients, these symptoms abate or resolve on their own during the first two phases. For many others, however, targeted treatment is needed at this phase. Cognitive-behavioral therapy (CBT) can be helpful in this regard.

4.) Working through the trauma of experiencing an eating disorder.

While many treatment programs address traumatic experiences that precipitated an eating disorder, few acknowledge that the experience of having eating disorder is itself very traumatic. Caring for a child with an eating disorder can be almost as traumatic as experiencing one. In many cases, the patient or her parents (or both) experience post-traumatic stress reactions at this point, such as disturbing nightmares, intrusive memories, and avoidance of stimuli associated with the eating disorder.

It is not uncommon for parents, drained and burnt out from the exhausting work of Phase I and Phase II, to have their own breakdowns at this point. Their child is well enough that they are no longer operating in crisis mode and they have some room to breathe. Once the survival instinct is no longer employed on a constant basis, parents have permission to experience their own reactions. Some parents fall into a depression; others feel disillusioned and cynical; still others suffer from extreme anxiety or lash out in anger. These are all normal, expected reactions to the trauma of almost losing a child. It is important for parents to get their own therapeutic support at this juncture if needed.

5.) Addressing grief.

Another often neglected aspect of eating disorder treatment is grieving what the eating disorder has taken. Not all patients and families experience this grief, but some do. I believe that when there is grief associated with the eating disorder, it should be discussed openly and addressed as part of the healing process. Patients often lose friends to their illness. They may have to take a hiatus from their favorite sport, or give it up altogether. Some patients miss a semester of school. Most are isolated from society for some time. At this stage, patients can feel the pain and injustice of losing a piece of their youth irretrievably.

Some parents may mourn the loss of their child’s innocence. They mourn the loss of life as they knew it. Many parents take time off from work and become isolated from their social circle as they help their child recover. Some parents mourn the loss of dreams they once had for their child which have been thwarted by ED.

No one emerges from the hell of an eating disorder unscathed. That said, some people are able to close that chapter in their lives and move forward, whereas others remain trapped by anger, sadness, or bitterness. It is important for patients and parents to work through their grief so that they can move forward in a life unencumbered by ED.

6.) Relapse prevention.

It is important for the patient and her parents to be aware of possible signs of impending relapse and to know what to do if these signs emerge. I find it very useful to discharge patients with a written relapse prevention plan which I have developed in collaboration with the patient and family.

7.) Evaluating the patient for co-morbid conditions.

Many patients with eating disorders experience co-morbid psychiatric conditions. Patients who continue to struggle with emotional or behavioral problems after the eating disorder has been resolved should be evaluated to determine whether they suffer from a comorbid disorder. The most common comorbid disorders are the anxiety disorders (including OCD, generalized anxiety disorder, panic disorder, PTSD, and social anxiety disorder), followed closely by mood disorders (depression and bipolar disorder). Other comorbid conditions may include autism spectrum disorders (such as Asperger’s), ADHD, substance abuse, and personality disorders.

8.) Getting the patient appropriate treatment for co-morbid conditions.

If the patient does indeed suffer from a co-morbid condition, it is important for her to get treatment for it. Treatment for a co-morbid disorder may include individual therapy, psychotropic medication, or a combination thereof. Cognitive behavioral therapy (CBT) in particular has been found to help many people recover from anxiety disorders, mood disorders, and numerous other conditions.

Posted on

Navigating Phase II

There is a common misconception that Maudsley Family-Based Treatment (FBT) is all about parental control of feeding. While Phase I of FBT does require parents to take control of their ill child’s food intake to help her restore her weight, FBT also encompasses two other very important phases. In Phase II, parents return control over eating to their child as she demonstrates readiness to eat on her own. Phase III involves helping the adolescent return to normal development and establish a healthy identity.

Weight restoration is an essential first step in overcoming AN, but it is only the first step. Equally important is the ability to feed oneself properly and maintain a healthy weight independently. Without the ability to eat independently, opportunities are limited and quality of life is greatly diminished. Recovery from an eating disorder is about more than just restoring a healthy body – it is also about restoring a healthy mind and a fulfilling life.

Phase I tends to be the most tumultuous and draining for the family and the most agonizing for the patient, but the task at hand is very straight-forward: eat more and gain weight.

Phase II, however, is much more ambiguous. Parents and clinicians struggle to determine when a patient is ready to begin Phase II. The patient herself may send mixed signals – she may beg for the freedom to eat lunch in the school cafeteria and go out to dinner with her friends, but yet she is clearly unable to take a single bite of food that isn’t “required” and “supervised.” To outsiders, the patient seems normal – she looks healthy, she acts more or less like a typical teenager (in between mealtimes, at least), but appearances belie the still-raging battle in her head. Still tormented by the anorexic thoughts and compulsions, she feels torn between a wish to return to the safety of emaciation and a desire to dive headlong into the normal life she has been missing.

I use the following benchmarks to help families determine when their child is ready to enter Phase II:

• The patient has been fully weight restored to his/her historic growth curve (per pediatric growth chart percentiles) for at least a few weeks. While the FBT manual (Locke & Le Grange, 2001) recommends beginning Phase II when the patient is at 90% of her ideal body weight, I have found that the vast majority of patients are not ready for any control over their food intake until they achieve 100% of their ideal body weight. In my experience, many patients need to maintain their ideal body weight for a number of months before they are ready to enter Phase II.

• The patient’s metabolism has normalized to the point that she no longer requires a very high-calorie diet. It is hard enough for the patient to feed herself a normal meal – don’t make it even harder by expecting her to serve herself very high calorie meals.

• The patient is no longer engaging in eating disorder behaviors such as restricting, bingeing, purging, or excessive exercise.

• The patient is eating all of the food her parents provide her, in a reasonable amount of time, without much fear or resistance. [NOTE: the patient will still have some anxiety around eating at this point – that is to be expected. The point is that the patient needs to be able to push through that anxiety and eat what she needs without a struggle.]

• The family is no longer operating in “crisis mode.” The parents feel confident that they can help their child defeat the eating disorder, and the child has accepted that her parents have taken charge.

• The patient expresses readiness to assume some control over her eating and confidence that she can feed herself appropriately. [NOTE: Many patients express a desire to regain control over their eating long before they are actually ready. This premature push for independence may be partially motivated by a normal adolescent drive for freedom, but it may also be motivated by ED’s desire to restrict and lose weight. Therefore, it is a mistake to use the child’s expressed readiness as the sole criteria for entering Phase II. Rather, you want to look for the child’s expressed readiness in addition to the previous criteria.]

Here are some general principles I discuss with families to help them navigate the uneasy waters of Phase II:

• Have a vision.

I like to begin Phase II with a vision of how the patient’s life will look at the end of Phase II. By the end of Phase II, the patient needs to be able eat on her own while maintaining her weight, in an age appropriate way, in the context of her family and her normal life. All patients, regardless of age, will enter Phase II eating in the same way – with parents in control of what, when, and how much they are eating. However, the end goal of Phase II is different for a 10-year-old than for a 16-year-old or a 22-year-old. A good frame of reference in creating your vision for Phase II is to look at the amount of autonomy the patient’s friends have with regards to their eating.

For example, by the end of Phase II, a pre-teen patient should be able to eat lunch with her friends in the cafeteria at school, order from a restaurant menu, select her own after-school snack and eat it without supervision. She should be able to have a few meals and snacks at a friend’s house during a sleep-over, or spend the day away from her parents on a field trip. She should still share meals with her family each day and eat what the family is eating.

By the end of Phase II, a high-school age patient should be able to prepare a simple breakfast and lunch for herself when needed, serve herself appropriate portions at dinner, eat a meal on occasion without her parents present (for example, dinner on her own if her parents are out for the evening), and go out to eat with friends. Regular family meals are still important for teenagers so that parents can keep an eye on their child’s eating behavior, even when the teen is eating many of her meals and snacks on her own. A young adult patient who is preparing for independent living should be able to plan her menu, shop for groceries, cook for herself, and eat without parental supervision.

• Take baby steps, go very slowly, and accept that this Phase will take a long time.

In my experience, Phase II usually takes somewhere between 3-12 months, depending on the severity of illness and other individual differences.

• Accept and embrace the fact that Phase II poses an inherent risk.

Like many things in life, giving a recovering anorexic more control over her food intake involves some degree of risk. It is likely that the patient will experience struggles and setbacks during Phase II. Try to learn and grow from these slips, and help her do the same. Keep in mind that you can, to some degree, manage the amount of risk involved by ensuring that the patient is genuinely ready before starting Phase II, monitoring her closely over the course of this phase, and stepping in to help her when needed. I liken this process to helping a baby learn to walk. You wait until she is confident in her crawling. Of course she will stumble and fall, but she will grow stronger each time she pulls herself back up. And you can provide her with a soft, carpeted surface on which to practice her steps.

• Have the patient practice choosing and preparing her food under supervision before she is permitted to eat unsupervised.

I typically start Phase II by having the patient choose and prepare one snack each day under parental supervision. The parents observe the child’s food selection and gently guide her in the right direction if needed. For example, let’s say the child chooses crackers with peanut butter and puts 4 crackers with a thin coating of peanut butter on each one. The parent may say: “That’s an excellent, balanced choice, but it’s not quite enough nutrition. Let’s put three more crackers on the plate and add more peanut butter.”

I usually require a patient to have at least a week of consistent success preparing a meal/snack under supervision before moving on to the next meal/snack.

• Be systematic.

I typically coach patients to proceed through Phase II by giving back control of one meal or snack at a time and allowing the child to gain mastery of each meal/snack before moving on to the next one. For example, the child may begin Phase II by assuming control of her own after-school snack, while parents maintain control of all other meals and snacks.

• Assess progress regularly.

The patient should be weighed weekly during this phase, and family members should keep tabs on her mental state and behavior daily. If she is maintaining her weight within her healthy range, and her mood and behavior around food are good, then it is time to move forward to more independence. If her weight drops, or if she demonstrates an increase in eating disorder behaviors (even in the absence of weight loss), then it is time for parents to take back more control of her food intake.

• Take back control when necessary.

Nearly every patient has a few setbacks during this Phase. It is the parents’ responsibility, with the guidance of their clinician, to take back more control over the patient’s food when she has not been able to manage eating on her own. The step backwards is a temporary measure to help her get back on track, and she will regain control when she demonstrates readiness.

• Some patients need a gentle nudge to move forward.

While many patients are all too eager to take back control over their food intake, some become overly dependent on their parents to feed them and have great difficulty moving forward. This makes sense in light of the nature of AN – being fed by your parents is a passive process which does not involve taking personal responsibility. The “ED voice” quiets down after several months of full nutrition, and the patient is able to eat well without too much guilt when she is being “forced.” The acts of preparing one’s own food, deciding what to order from a restaurant menu, or choosing whether to have a snack when no one is watching – these are all acts of defiance against the “ED voice.” Patients are flooded with anxiety, indecisiveness, and guilt when the time comes to make these choices. It is a scary step for parents and patients alike. Some patients require lots of encouragement to become more independent with their eating. I find that it is often helpful to remind the patient of the benefits of being able to eat independently, such as spending more time with friends and doing other activities away from home. Some younger patients respond well to concrete, short-term rewards for eating independently. For example, a 6th grader who successfully manages her afternoon snack every day for a week without weight loss may be rewarded with a trip to the movies.

• Be realistic.

Many parents lament that their recovering child no longer goes out for ice cream on a whim or breezes into the kitchen to grab a few cookies or gives herself generous second helpings of her favorite meals. I advise parents that it is unrealistic to expect a recovering anorexic to eat freely or spontaneously. Some people who have recovered from AN are eventually able to eat intuitively, but not until they have been well for at least a year or two.

• Don’t force Phase II into an external timeline.

Don’t rush through this phase just so that the patient can eat lunch with her friends when the school year starts go away to college at the same time as all of her friends. The only timeline that matters is the patient’s recovery timeline, which may or may not be convenient for her (or you). Each person’s recovery moves forward at a different pace.

• Remember that whatever happens is simply feedback, not failure.

Keep in mind that the patient will probably struggle quite a bit at first. Re-learning how to feed oneself properly after a bout of AN is a very difficult task. If a patient is not able to take charge of a meal or snack, that says nothing about her character or her effort or her prognosis for recovery. It simply means that she is not ready for that step yet. Expect the patient to make mistakes, and be there to help her correct them without blame or judgment. Remember that she is doing the best she can.

• Keep things in perspective.

As challenging as Phase II can be, don’t lose sight of how far the patient has come. She is eating well, she is at a healthy weight, she is medically stable, and she is in effective treatment. In the long run, it doesn’t matter whether someone breezes through Phase II or whether it takes over a year – she’s safe, she’s physically healthy, and she will recover eventually.

Posted on

Not So Fast: Making Major Life Changes After an Eating Disorder

When a loved one is recovering from an eating disorder, there is pressure from many sources to jump back into “normal life” as quickly as possible. Insurance companies stop paying for treatment as soon as it’s no longer medically necessary. Friends and family members can’t comprehend why she can’t return to college/soccer /summer camp by now because she “looks great.” The patient herself is tired of being supervised and worried about and carted to so many doctors’ appointments. Everyone seems to long for some sense of normalcy.

Like many psychiatric illnesses, eating disorders are often characterized by periods of exacerbation and periods of remission – a general waxing and waning of symptoms at various times. Symptoms may or may not be present at any point in time, but the predisposition is life-long. Stress of any kind has the potential to trigger a setback or a relapse.

We all have stress in our lives. Some stress is unavoidable, some foreseeable, some self-imposed. We can’t really predict or control certain major life stressors, such as natural disasters, car accidents, or the death of a family member. But we can control some of life’s stress – we can decide whether and when to make certain major life changes.

Keep in mind that significant life changes – even joyful ones – almost always involve stress, and those with eating disorders or other psychiatric illnesses are more prone to suffering the negative effects of stress than the average person. Therefore, I recommend that my patients who are recovering from an eating disorder have at least twelve months in full remission prior to embarking on a major life change, such as going away to college, living independently, moving to a new city, getting married, or getting pregnant.

What exactly does full remission entail? Well, it depends who you ask. One of the worst definitions of full remission I have ever heard is BMI of 18.5. Don’t even get me started on that one.

My definition of full remission from an eating disorder is comprehensive, involving physical, behavioral, social, and psychological parameters:
• Maintenance of 100% of ideal body weight
• Start or resumption of regular menstrual periods (in post-pubertal females)
• Stable vital signs and blood work
• Complete absence of binge eating and purging behaviors
• Complete absence of excessive, obligatory, or compulsive exercise
• Ability to tolerate a wide variety of foods and eating situations (restaurants, parties, picnics) with minimal anxiety
• Following a regular eating pattern of three meals and 1-3 snacks per day
• Ability to eat independently, at an age-appropriate level, while maintaining ideal body weight
• No more than mild body dysmorphia or body image preoccupation
• Return of normal (pre-illness) personality
• Regular engagement in age-appropriate activities (school, work, church, clubs, lessons)

So, if a patient plans to embark on a major life change, I strongly recommend that she meets all of the above criteria, consistently, for a minimum of 12-months before doing so.

You may ask, why wait 12 months? Why not just follow your dreams and start law school/tie the knot/have a baby as soon as the eating disorder is in remission? Here’s why:
• Because it takes at least 12 months for the brain to heal from the effects of starvation
• Because a patient’s vulnerability to relapse is greatest during the first 12 months
• Because it takes months to build new neural pathways, break free from engrained patterns of thinking, and establish healthy habits
• Because excess stress impairs ability to establish and maintain healthy habits
• Because maintaining remission is extremely difficult at first, but becomes easier as time passes
• Because certain life changes, such as getting married or having a child, involve the fate of another person whose life would be adversely affected by a recurrence of symptoms
• Because achieving remission was the hardest thing you’ve ever done, and you’ll do whatever you can to avoid having to go through that whole process again

With so many uncontrollable factors in life, why choose to add more stress so soon after a life-threatening illness?

In my opinion, it’s just not worth it.

Posted on

Brain-Based Language and Eating Disorders (by guest blogger Carrie Arnold)

The following is a guest blog post from Carrie Arnold, science writer and blogger, who attended the International Conference on Eating Disorders with me earlier this month.

Language is a funny thing.

I’m a writer–every day, I see (and use!) the power of words to explain very esoteric subjects, to comfort a friend, and even to entertain. The language we use to talk about eating disorders is also important. It was refreshing to have a psychotherapist describe me not as “an anorexic,” but as “someone with anorexia.” Anorexia was a diagnosis. It wasn’t me.

The issue of language in eating disorders goes far deeper than whether or not to use anorexic or bulimic to describe someone. It cuts right to the heart of how we understand eating disorders and how we treat them. One of the sessions at the 2012 International Conference on Eating Disorders in Austin, Texas discussed the use of brain language in regards to eating disorders. Laura Collins, founder and executive director of FEAST, spoke about how the biological language can be empowering to parents and sufferers. Brett Deacon, a psychologist from the University of Wyoming, spoke of the power of the biopsychosocial model of mental illness, and the potential dangers of biological language. Anne Becker, an anthropologist and ED expert from Harvard University, talked about how language affects our perception of EDs. Lastly, Kelly Klump, a behavioral geneticist from Michigan State University, asked the crucial question: is it time for new language or new data?

First, a mini-history lesson. As neuroimaging techniques and other brain science has advanced in recent years, scientists studying mental illness have begun to use these tools to explore the biology of mental illness. Without these tools, researchers could only look at the psychosocial factors that contributed to mental illness, and they accumulated a mass of very important data on the subject. But neuroimaging and other techniques have allowed scientists to probe biological variations that might contribute to mental illness. Leading psychiatrists and psychologists like Tom Insel, director of the National Institute for Mental Health, have argued that these significant biological differences mean that “mental illness” should be renamed “brain disease.”

To some, a brain disease by any other name surely doesn’t smell as sweet. To me, the use of “brain disease” or, an alternative, “biologically-based mental illness” seems obvious. Depression, schizophrenia, and eating disorders affect the brain. That’s where they start. Deny that, and you may as well call them Big Toe Disorders or something equally ludicrous. If they’re not brain disorders, then what are they? I’m not asking a rhetorical question-I really would like an answer.

One potential answer that Dr. Deacon suggested was the biopsychosocial model. Mental illnesses are really biopsychosocial illnesses. Which is accurate. My problem with that term is that every disease, from eating disorders to cancer to diabetes, has biological, psychological, and social components. It’s like taking cows, sheep, goats, horses, dogs, and cats and putting them in a barn and trying to tell them apart by figuring out which have four legs.

I don’t know of anyone out there who can support the assertion that EDs are only biological. Genes matter, yes, but so does environment. Laura presented statements from families around the world that biological language like “brain disorder” gave them a way to move forward. Looking for blame didn’t really matter anymore. They could reframe their loved one’s behavior: instead of being a willful teen refusing to eat, they had a sick adolescent who wasn’t able to eat.

One of the main concerns with the biological language is the potential for stigma. If your genes caused your illness, then you’re screwed. After all, your genes are your genes, and they’re not changing unless you stand in front of some gamma rays. Which I wouldn’t recommend. Basically, then, it’s easy to see how biology would support the view of “Once an anorexic/bulimic, always an anorexic/bulimic.” Recovery was a hopeless endeavor.

While it’s true that you’re stuck with the genes you’re born with, your biology isn’t written in stone. To paraphrase biologist PZ Myers, biology isn’t rigid. It’s a bunch of squishy processes making do. Your genes don’t change, but their expression does. It’s a process known as epigenetics, whereby genes are regularly activated and silenced by various environmental factors. It’s entirely possible that the negative energy balance (that is, burning more calories than you’re consuming) that typically precedes anorexia activates genes that perpetuate the food restriction. It’s also entirely possible that nutritional rehabilitation silences these genes or activates other ones that help the brain and body return to normal.

The problem, then, isn’t with the biological language per se, but rather our culture’s generally abysmal level of scientific literacy. These concepts are difficult for even PhD scientists to understand. But as society’s awareness of the biological contributions to brain diseases/ mental illness grows, perhaps the understanding of the complex biology will improve as well. In fact, a study by Cindy Bulik and colleagues at UNC found that biological language actually decreased the stigma of anorexia, rather than increasing it.

Saying things like “brain disease” also doesn’t mean that the only solution is a pill. Although I do benefit from medication, I’m hardly a shill for Big Pharma. Psychotherapy remains one of the best ways to reliably change the brain long-term. Researchers found significant brain changes when a group of people with spider phobia underwent a course of cognitive-behavioral therapy. The authors conclude that “These findings suggest that a psychotherapeutic approach, such as CBT, has the potential to modify the dysfunctional neural circuitry associated with anxiety disorders. They further indicate that the changes made at the mind level, within a psychotherapeutic context, are able to functionally “rewire” the brain.”

At some point, however, all of this “language talk” makes me want to throw up my hands in frustration. Aren’t we just wasting loads of time playing at semantics? Call it Rainbows and Kittens for all I care!

Except that language really does matter. A recent study in the American Journal of Psychiatry found that people were significantly more likely to believe that someone needed treatment when they were diagnosed with social anxiety disorder versus social phobia. In the state of New Jersey, it was legal for health insurers to deny paying for anorexia treatment because it wasn’t a biologically based mental illness. A recent class action law suit caused this provision to be overturned and anorexia and bulimia treated on par with depression, bipolar disorder, and schizophrenia. Language matters, and it matters a lot.

The talk at ICED didn’t necessarily settle the matter, but then it wasn’t meant to. The most important thing was how it provided a better understanding of what we all mean when we say things like brain disease or biopsychosocial. What I mean when I say brain disease isn’t necessarily what other people mean. I know that talking about the biology of eating disorders doesn’t mean that environment is irrelevant as is psychotherapy. But that’s not necessarily what other people think. Perhaps what the field needs to do is clarify what their terms mean and how they use them in a sentence. Only then can we start to have a meaningful dialogue that will move the field forward.

Posted on

Show Me The Science

The debate over evidence-based practice (also known as empirically-supported treatment) in psychology is contentious and polarizing. Evidence-based practice, as defined by the APA, is “the integration of the best available research with clinical expertise in the context of patient characteristics, culture and preferences.” The debate over evidence-based practice can be summarized as follows:

Proponents of evidence-based treatment argue that clinical psychologists are scientists, that psychotherapy is (or should be) based upon scientific theory, and therefore therapists must use the best available scientific evidence in their practice of psychotherapy. They argue that the public must be protected from therapies which are not evidence-based, as such therapies may be ineffective or harmful.

Opponents of the evidence-based practice movement argue that psychotherapy is an art rather than a science, and that the essence of what they do – the “human element” – cannot possibly be manualized or subjected to clinical trials. Opponents are typically therapists who practice relationship- or insight-oriented approaches. They see their work as diametrically opposed to the principals of evidence-based practice.

I understand and appreciate the arguments of the opponents, and I do believe they have some valid points. However, I have established my professional identity as a strong proponent of evidence-based treatment.

When you visit a physician for an illness and she prescribes a medication, you can safely assume that the medication has been FDA-approved for your particular illness, that it is likely to be effective, and that it is unlikely to seriously harm you.

Imagine the following scenario: Drug A was used to treat Illness X twenty years ago. Then, ten years ago, clinical studies showed that Drug B is significantly more effective than Drug A in treating illness X. A physician, Dr. Dolittle, continues to prescribe Drug A for Illness X because he really believes it works, and because he was taught that Drug A works well when he was a medical student 20 years ago. Dr. Dolittle does not inform his patients that Drug B exists, because he doesn’t believe it will work for them and he has no experience with it.

The scenario described above would not happen in medicine, would it? And if it did happen, Dr. Dolittle would be reprimanded by the medical board and may have his license revoked.

Believe it or not, this scenario happens in psychology all the time. Most people outside the field would be shocked to learn that the majority of psychological treatment out there is NOT evidence-based.

I have seen patients who underwent years of psychodynamic therapy for severe depression, without getting any better, without being told about cognitive-behavioral therapy (CBT) and without being referred to a psychiatrist for a medication evaluation. I have seen patients with anxiety disorders whose psychiatrists have prescribed multiple medications for them, never once referring them for psychological treatment, without ever mentioning that CBT at least as effective, if not more so, than medication for most anxiety disorders. I have seen patients who suffered from eating disorders for many years, who have seen many therapists, who have had multiple stints in residential treatment and have taken numerous medications, but were never restored to their ideal body weight and never provided with the support they needed to eat properly. And finally, a substantial portion of my case load is comprised of teenagers with eating disorders who have experienced months or years of ineffective, non-evidence-based treatment. The families of these teenagers were never informed about Family-Based Treatment (FBT), which is the only empirically-supported treatment for adolescents with eating disorders. Their parents discovered FBT on their own through desperate late-night internet searches.

These patients are pleasantly surprised to see how quickly and dramatically they improve with evidence-based treatment. They are also angry that they were not provided with, or at least informed about, effective treatment from the start. I believe that all patients and their families deserve to be fully informed about the range of different treatment options available to them, including evidence-based treatment. I do believe that there is a place for non-evidence based treatment, but patients and families should know from the outset what they are getting.

Evidence-based practice is not about using treatment manuals verbatim, or only relying upon randomized clinical trials. Treatment manuals are necessary for research and dissemination, but they are not intended to be followed verbatim with every patient in the real world. Manuals don’t treat patients – they merely provide a guide and a plan of action which may be revised and altered as needed for each unique patient. The basic principles and techniques of the treatment are the brick and mortar; the details of each room can and should be tailored to the individual.

Clinical psychology is a science, but it is not as precise as the so-called “hard sciences” like physics or mathematics. The brain is too intricate; human behavior too complex to be boiled down to immutable formulas. There is, and always will be, room for intuition, creativity, spontaneity, and that intangible “human element” that cannot be manualized or subjected to laboratory research. But the evidence base is there, so we owe it to our patients and to our profession to use it. Otherwise, we are no better than Dr. Dolittle.

Posted on

A New Awareness

Tomorrow, National Eating Disorders Awareness Week (NEDAW) begins.

NEDAW is a public health initiative designed to educate people about eating disorders. While I applaud the good intentions and effort that go into planning and executing NEDAW, I will not be participating in any of the events. I do not believe that the messages conveyed during NEDAW are particularly helpful: instead of correcting the myths and misconceptions associated with eating disorders, NEDAW just seems to perpetuate them.

For example, the National Association of Anorexia Nervosa and Associated Disorders (ANAD) posted the following on their website in under the heading Eating Disorders Awareness Week 2012:

“Through intentional activities, conversations and events we can all help create an environment that redefines outdated thinking, reduces the stigma associated with weight, body shape, or size, and inspires someone to reconsider an unhealthy attitude or behavior.”

There are several assumptions imbedded in this sentence:
• The environment causes eating disorders by making people feel dissatisfied with their bodies.
• People develop eating disorders because they are insecure, vain, shallow, appearance-focused, or overly influenced by the media.
• By altering the messages people receive from their environment and eliminating the “thin is in” culture, we can prevent or cure eating disorders.
• Overcoming an eating disorder is about reconsidering unhealthy attitudes or behaviors.
• If you have a friend or family member suffering from an eating disorder, you should try to inspire him/her to reconsider his/her unhealthy attitudes and behaviors.
• The unhealthy attitudes and behaviors associated with eating disorders are willful and consciously chosen.

Of course, none of these statements are explicit, but they don’t need to be – the public will draw these conclusions on their own.

I wholeheartedly agree that our culture is toxic and that the messages we receive about body image, beauty, food, and sexuality are horrific and damaging. I do not object to these principles at all – quite the contrary – but I do object to focusing on these messages during National Eating Disorders Awareness Week.

The current public health message associated with eating disorders awareness week is something akin to “Girls are dying to be thin, so let’s all love our bodies!” The themes of NEDAW revolve around thinness, body image, and the media. The concept of psychiatric illness is lost. Of course, it does not help that most eating disorder treatment professionals, eating disorder organizations, tabloid magazines, and recovering eating disorder patients espouse the same body-image centered messages.

I would like to change the public health mantra to something along the lines of “Eating disorders are highly heritable brain-based illnesses with severe psychiatric and medical symptoms.” My ideal public health message for EDAW would also contain the following points:

• Most symptoms of anorexia nervosa and bulimia nervosa are triggered or perpetuated by malnutrition. For those who are biologically vulnerable, dieting can trigger a cascade of self-perpetuating symptoms which lead to life-long psychiatric disability or death.
• Body dysmorphia is a symptom, not a cause, of an eating disorder. It is not present in all eating disorder patients, and it bears little relation to the typical woman’s body image distress.
• Early, aggressive intervention offers the best hope for full recovery.
• An eating disorder is a brain disease, not a weight problem.
• There are a variety of methods for treating eating disorders. Most of the eating disorder treatment available is NOT based on current science or evidence-based practice. Patients and parents must be proactive in finding effective treatment.
• Anosognosia – a neurologically-based inability to recognize one’s illness – is a symptom of Anorexia Nervosa. Therefore, patients should not be expected to “want to get well.” It is up to the patient’s loved ones and clinicians to ensure that he/she gets appropriate treatment as soon as possible.

These are the points that the public needs to hear. These are the points that will truly change the way eating disorders are perceived.

There are many eating disorder treatment professionals out there who will participate in a NEDAW walk or rally, or wear a “Love your body” T-shirt, or attend a screening of “America the Beautiful,” and then head to the office to practice outdated, ineffective treatment.

Next week, I will be promoting eating disorders awareness by providing my patients with the most current, evidence-based information and treatment, and by spreading scientifically-sound information through my blog and through my conversations with people. Please join me!

Posted on

Got Hope?

“I’ve been in therapy for 18 years, and I’ve still got a pretty significant case of Anorexia.”

Recently, these words were uttered to me over the phone by an adult with Anorexia Nervosa (AN) who was desperate for help. A successful professional and devoted mother to three young daughters, she, like so many who suffer from AN, seems to “have it all.” Her husband was aware of her illness – he had attended a few therapy sessions – but it was never discussed openly. Although he was terrified that she would die, he had no idea how to help her. In fact, he had been advised by her former treatment providers that he should not try to “fix” her – that was her job. Like most men, he was begging for something concrete, a specific job to do, something to latch onto and work towards to help save his precious wife.

“I know my life inside and out,” this woman told me. “I have so much insight. It just hasn’t gotten any better.”

If someone has been in therapy for 18 years – or even 18 weeks – there should be marked, measurable improvement. Even 18 days into treatment, there should be something concrete – a written treatment plan, psycho-education for the patient and family, recommendations of reading materials and resources, development of specific goals. There should be hope. Psychotherapy research has shown that the instillation of hope – which is one common factor present in all types of psychological treatment – is the predominant mechanism of change in the first few weeks of treatment.

If someone who is suffering from a life-threatening, soul-killing mental illness for 18 years without making any improvement, where is the hope? How can someone possibly have hope that their condition will improve when they have been dutifully going to therapy with eating disorder experts for almost two decades? In the amount of time it takes to raise a child from birth through high school graduation, there has been no measurable change. Can you imagine such an interminable, grueling, agonizing battle?

In these chronic cases, inevitably the patient begins to blame herself. Her family, once supportive and nurturing, becomes paralyzed with guilt and fear, with anger and frustration. They, too, lose hope.

Let me tell you this: if you have been in treatment for 18 years, 18 months, even 18 weeks, and your condition has not improved, TREATMENT HAS FAILED YOU. No matter how long you have suffered, no matter how many treatment programs you’ve been through, or how many therapists you have seen, or how many relationships have been destroyed by this horrific illness, THERE IS HOPE.

New science offers hope for people with AN. We know so much more now than we did even 5 years ago. This new knowledge is power – it is ammunition against even the most severe, chronic, “treatment resistant” cases.

If you have been in treatment for a significant period of time without improvement, please do not blame yourself. It is your treatment team’s job to help you get well. Even if you don’t want it. Even if your motivation wavers. Even if you are ambivalent about change. These feelings are symptoms of the illness, and you deserve treatment regardless. If your therapist is kind and warm and empathic and you have wonderful relationship, that is terrific – but these things alone will not get you well.

You need a treatment team that will stand up to AN; a team that will insist upon prompt nutritional restoration, achievement of your optimally healthy body weight, cessation of eating disorder behaviors, skills to cope with unhealthy thoughts and negative emotions, and treatment of any comorbid psychiatric conditions.

If your clinicians have not been able to help you, I beg you, I implore you, to find a second opinion. Find a third, fourth, fifth opinion if needed. You deserve effective treatment, and you need something concrete – a specific plan – to help you reach full recovery.