I am not my Eating Disorder: Separating Identity from Illness

Eating disorders begin at a particularly vulnerable time of life. Adolescence revolves around conflict, namely the push for independence vs. the yearning for the safety of childhood. The urge to break new ground and become a separate person combined with the still immature understanding of identity often leads a confused teenager to simple, even comical, shifts in their persona. No reasoning can dissuade the adolescent bent on fashioning themselves an acting prodigy, an expert on political debate, the ultimate savvy socialite, the IT guru or just plain right about everything. The sudden changes in identity, the need to be instantly best at something, the urgency and totality of every self-invention all represent the desire to solve the problem and become someone else, as if identity can be chosen in a moment.

But that's exactly what an eating disorder can do. The eating disorder gives instant purpose in many ways. First, the power to manipulate your body is clearly prized in society. The disorder creates a long list of rules about how to live life: all decisions are made based on when, how and what to eat. The comforting and even superior feeling of having a way to live and a physical identity to cling to is incredibly satisfying. Suddenly, the desire for identity is complete. With the onset of symptoms comes attention and praise. A potentially life-threatening, debilitating illness can be the envy of everyone, at least for a moment or two.

What passes for a magical identity in adolescence is an albatross in adulthood. When identity forms around an eating disorder, the complex and mature inner sense of who we are never comes into being. Linking identity to the goals of an eating disorder leaves a hollow, empty feeling inside. The power to manipulate one's body and the eating disorder rules appear meaningless when the internal struggles change after adolescence and into adulthood.

However, if someone is still stuck in the illness come young adulthood, there is no easy way out just because one's psychology no longer needs the eating disorder. The urgency to find a new philosophy of life isn't enough to escape an eating disorder, and life without the eating disorder feels impossible, as if the core of one's being is being taken away. So the most common result through young adulthood is that identity and the eating disorder fully merge.

A clinician needs to be aware of this psychological process. The patient may be clear about wanting to get better but may not understand that their identity is so tied up with the illness. No one can get better when they are the eating disorder. When the behavioral and psychological symptoms appear to be very fixed, therapists often ascribe stalls in recovery to low motivation. The frustrated therapist's message boils down to: "If you would just buck up and eat, you will get better."

More often, the attachment to the disease as identity makes clear, visible progress so terrifying that the person ends up paralyzed. The desire to get better has little effect in the face of losing who you are. The best analogy is the child sports star suddenly unable to play or the child actor whose career dries up. An eating disorder feels like an achievement in adolescence. It's an accomplishment to have conquered food and body when so many others struggle with weight and self-image every day. Eating and having a normal body feels like letting go of the only true achievement in life. From that vantage point, getting better isn't about motivation. It's about losing your one anchor and entering a terrifying unknown.

The work in therapy is to separate identity from the eating disorder. This concept may make sense abstractly but is harder to imagine practically. The truth is that after years of being sick, the patient does have an identity and personality separate from the eating disorder. That's clear to anyone who knows the person. But identity is not what others see; it's what you see in yourself. The clinician's job is to repeatedly point out what other people see instead. Helping the person see themselves through someone else's eyes can gradually shift identity as well. The goal is to recognize that the internal identity of the eating disorder is, and always has been, false.

Starting to question our being is the hallmark of adolescence. Even a few years later in life, the disorientation of such urgent self-reflection is more daunting, the pull back to what we know even stronger. When the source of safety is a tenacious illness, the process of forging a new identity is even more frightening. For the gradual separation of identity from disorder to last, therapy must use the person's outside life to reinforce the false safety of the illness. Engaging friends and family in the process will allow the patient to understand that others see a very different person than she imagines. When trying new activities or meeting people in new situations, each opportunity calls into question whether identity is really just the eating disorder. By applying constant pressure to the assumption that the eating disorder is everything, the therapy can gradually drive a wedge between patient and illness and open the door to different expectations in life.

The next post will address more practical steps to separate identity from the eating disorder.

Goals for Treating People with Chronic Eating Disorders

A discussion of goals has to start by addressing the obvious question: can people with chronic eating disorders recover? The answer is an unequivocal yes. The deepest fear for anyone who has been sick for many years is a lifetime sentence to an eating disorder. Unless the clinician directly faces this concern, every patient will leave assuming the worst. Thus, it's essential that a discussion of goals explicitly puts recovery at the top of the list.

The second assumption someone with a chronic eating disorder will likely make is that the stated goal of recovery is just a lie created to give false hope. Who in their right mind would think someone can get better after five, fifteen, twenty five years of a brutal illness? Yet those people can and do get better. The road to recovery is long and hard and painful, punctuated by too many moments when all feels lost. A constant theme in therapy must be repeating the idea that recovery is a real option and that a life not plagued by this illness possible.

Recovery, however, cannot be confused with paradise or nirvana. Anyone who has struggled with a chronic illness will be affected by that experience throughout their lives. They can get well but will always have a different perspective of life. They need to be prepared to face their own life circumstances, persevere and move forward, and not think they can rewind life to what they envisioned before the illness. It's crucial to build resilience into the goals of treatment early and represent recovery as a life not completely dominated and controlled by the eating disorder symptoms, not the imagined life they might have led were they not sick.

With these guidelines, the therapy needs to narrow down from large scale expectations to day-to-day goals. Two aspects of chronic eating disorder treatment are central to understand to establish feasible goals. First, the patient is bombarded by thoughts and instructions by the eating disorder itself all day long. These commands, from thoughts to restrict to urges to binge to constant confusion about what to eat, occupy far and away the majority of mental energy of someone with a chronic eating disorder. It's practically a miracle they can do anything else in a day. These thoughts are all consuming, very unpleasant and impossible to ignore. The eating disorder thoughts easily drown out the few sessions or hours of treatment per week. Whereas more limited treatment can reverse an eating disorder earlier in its course, therapy for a chronic eating necessitates daily, constant intervention to make a dent in the relentless illness. Second, these thoughts become the person's identity. After years of living through constant eating disorder thoughts, it becomes very hard to differentiate between the eating disorder and oneself. 

Since no therapy can last all day, every day, the therapist and patient need to collaborate to extend treatment into a daily intervention. Trying to force this treatment into the standard treatment protocol leads to sure failure. A team cannot present an immediate food plan and expect a person sick for many years to make instant changes because they are suddenly more motivated. Eating disorders are just too tenacious to let go because the ill person wants to get better. The clinicians and patient need to explore the nature of the eating disorder and look for loopholes, ways to insert new thoughts and actions into each day. Through more communication via more hours in treatment, food logs, journaling, emailing or texting, the team can be in regular contact so the patient isn't alone with the illness all day long. Creating a new environment in which several people are putting their minds and time into changing a longstanding pattern of illness opens a new door to recovery.

In this circumstance, the practical goals come into clearer focus: stay in touch regularly, communicate through the day, watch for signals or patterns of distress and create and try out new behaviors to replace the eating disorder. The therapeutic effect of these changes is profound and necessary to be sure treatment heads towards recovery.

It's usually eye-opening for a chronically ill patient to see any change in the eating disorder behavior from simple interventions. That first blush of progress begins a new path of recovery. The psychological imprint of years of an eating disorder feels untouchable, yet the start of relationships that may affect the illness is revelatory. It opens that person's mind to possibilities long forgotten. From the therapist's perspective, the person's identity has completely merged with the eating disorder. One doesn't have anorexia or bulimia; one is anorexic or bulimic. The process of separating identity from the eating disorder is critical to successful treatment because it allows in real hope for recovery once again. Yet it's also the most challenging. The next post will address this topic in detail. 

The Hard Line in Eating Disorder Treatment

The refrain from clinicians who treat patients with chronic eating disorders is that there aren't any standard effective treatment options or any useful literature to read. Without a method to rely on, clinicians have turned to the field of addiction for guidance. The accepted approach for a therapist in that realm is rigid and punitive. The eating disorder version of the hard line is as follows. Present the patient with viable treatment options along with meal plans to follow and weight guidelines. If the patient can follow these rules then treatment can proceed. If not, then come back when you're ready. Outside of this simplistic, punitive approach, therapists are on their own.

The premise behind this kind of therapy is that engaging a patient in unsuccessful work will enable worsening of the disease. The eating disorder symptoms will persist without any immediate change in behaviors. More to the point, responsibility for any deterioration will now lie on the clinician's head.

It's no wonder there appears to be so many people with chronic eating disorders not in treatment. The unspoken agreement to hold the hard line among eating disorder professionals lets us all off the hook. No one needs to worry about the chronically ill. They have brought their desperate state upon themselves by refusing the correct course for recovery. Let them think about it and come back in time.

But people come to treatment for help. A one size fits all approach to treating eating disorders is not only reductive but cruel. These are complex, misunderstood illnesses with moderately effective treatments at best and few viable options at worst. How can we as therapists say we have the answer when there is no evidence behind the rigid approach to treatment?

The fear of enabling the illness can easily mask the fear of the therapist to take on such a challenging case. Working through a complex chronic eating disorder takes a lot of time and energy for the patient and therapist. There is certainly no guarantee of success and a high likelihood of managing serious medical problems that stem directly from the eating disorder. It would be more honest for a clinician to say he doesn't have time or expertise for a complex case than to place the blame on the patient. 

What happens when this patient does find a therapist? Things don't get easier. It's just as hard to assemble a team or find a program willing and able to confront the therapeutic challenge of treating someone with a chronic eating disorder, yet these options are clearly more effective than individual therapy alone.

If the patient agrees to more intensive care, most outpatient programs or residential programs cater best to younger patients earlier in the course of the illness. For someone not yet ready for more involved help, it's often a long, uncharted road to understand the eating disorder and institute behavioral changes with food. No manual exists to explain the baby steps in this type of recovery. No map points to paths to success. And no role models offer hope for the chronically ill. It's no wonder many of these patients stop seeking help.

Yet those are the available resources. Any work towards recovery either stays isolated to just individual therapy or expands into a team and/or program. The team offers more chance of full recovery because a patient need different providers to focus on all aspects of treatment and more time and energy to compete with the ever-present psychological and behavioral symptoms. Even the best therapy cannot accomplish all components of treatment. But assembling a team or involving a program also means accepting the misunderstanding and confusion that affects even experienced professionals in facing a complex, chronic illness. Although regular communication among team members and with the patient improves outcome, the patient will have to endure many challenges along the way. Being so resilient while dealing with an eating disorder isn't easy for anyone.

If we assume that treatment has begun and a team of seasoned clinicians assembled, the steps in treatment are still hard to determine. More than with people earlier in their illness, the treatment of chronic eating disorders has two critical components for success. First, it's essential for the team and patient to agree upon reasonable markers of progress and a reasonable timeframe for each step. Balancing the severity of the illness and barriers to progress is not uniform so each patient needs an individualized program. These markers fundamentally represent hope for change and recovery, a sentiment that can be hard believe after a patient has been sick for years. Yet without hope, the treatment is even more challenged from the start. I'll start with these two points in the next post.

Eating Disorder Therapy Decisions: the Hard Line vs. the Risk of Enabling

When faced with new, intractable illnesses without clear treatment, the medical field doesn't have the time to really help. The current climate of medicine forces doctors to rush from appointment to appointment without time to think or sometimes even care. Doctors are too harried, overworked and under-appreciated to be capable of more than the basic standard of care.

Challenging treatment for difficult diseases demands both creative thinking and compassion to open up the possibility of clinical improvement, let alone a cure. There's no room for that kind of medicine anymore.

Eating disorder treatment has come a long way in recent years. If the person's disease is relatively uncomplicated, compassionate treatment is enough. For example, the course of care for an adolescent with her first serious episode of an eating disorder is fairly routine. The patient starts in an inpatient program or intensive outpatient program, depending on severity of the symptoms, in order to normalize eating behaviors and weight. An outpatient team takes over treatment after a period of weeks or months while reintroducing the patient back into normal life. The patient is still young enough to allow the strong presence of family to guide treatment decisions, and the enforced cessation of symptoms often is enough to halt the progression of the disease.

Patients with a chronic eating disorder have had a different course of illness. They have adapted their lives around variable eating disorder symptoms and have had to recognize the dominance of the disease in their lives. They are old enough to be independent and not under the aegis of parents' decisions. They come to treatment often not ready to follow the set course of interventions but solely because they are sick of their illness and want help either to manage it or to get better.

What are the treatment options for these patients? Some clinicians follow standard practice. If the eating disorder symptoms are severe, inpatient or intensive outpatient treatment is necessary. In fact, many clinicians will stop treatment unless the patient seeks more intensive care. The reasoning is that outpatient treatment cannot be successful without normalizing eating and weight. Continuing treatment without medical stabilization sends a message of false hope, perhaps even enabling the disease to remain dominant. Many clinicians interpret this approach as tough love, similar to an approach used to treat addiction, while many patients interpret it as rejection and confirmation of the hopelessness of their cause.

Any different treatment for people with chronic eating disorders has no blueprint. The years of being ravaged physically and psychologically by these illnesses takes a toll. The first step in treatment involves a thorough medical and emotional inventory and a reasonable assessment of short and long term goals. Even then, the path to improved symptoms and quality of life won't present itself clearly.

If the initial assessment both on the part of patient and therapist leads to further treatment, it involves breaking new ground. Any progress stems from creative approaches both from patient and clinician and a willingness to try them even if they fail. All the while, the treatment has to include intensive management of the medical effects of the illness and hope that continued care isn't a means to allow the eating disorder to worsen.

There are risks to both approaches to treatment. Taking the hard line leaves the chronically ill patients alone with their disease with nowhere to go for help. Therapy with the chronically ill revolves around the constant presence of uninterrupted symptoms and the medical consequences of an eating disorder. Without clearly successful interventions for eating disorders, patient and clinicians are stuck with these hard choices.

The next few posts will address these two camps of eating disorder treatment and what it means for a patient seeking help.

What Families Should Know about Eating Disorders

Treatment for an eating disorder is a long hard road. Part of the reason relapse rates are so high and full recovery so difficult is the enduring emotional struggle even after normalizing food and weight. It takes personal fortitude and outside support to help people in recovery not succumb to the iron will of an eating disorder. The crucial but often missing piece for families to understand is that the battle isn't over when someone looks normal again.

It's standard to educate families of people with eating disorders for the best chance for full recovery. Most treatment programs provide family groups in which the group members bring families for an education session. Primary therapists usually include the family in sessions from time to time for the same reason. Recommending books to families can help the patient feel better understood and expand what kind of support is available in the treatment. There are a few practical points all families need to best participate the process.

Everyone is aware of the eating disorder behaviors, restricting, binging and purging. Most families assume that ending these behaviors means full recovery. That false statement is especially worrisome when the patient goes to an inpatient treatment program. Upon admission, the relief for the family is significant, and the expectation is that the patient leaves the program fully cured. Unfortunately, that's never how it works. From the moment of admission, families need to understand that a program can jump start treatment, but that support will be even more necessary once the loved one comes home.

Learning how to eat back in the world has new challenges both in choosing and preparing food and in handling the stresses of life without returning to the eating disorder symptoms. In addition, it's very difficult to struggle to eat while trying to accept the changes to one's body. The underlying, internal critical thought process, the main psychological symptom of an eating disorder even after resuming normal eating, is much stronger after treatment. Consistent, loving support is the best antidote.

One inevitable mistake families make is to focus on the food. Patients avoid families most frequently because of feeling constantly watched at meals. The monitoring always comes from a caring place. After feeling so powerless, families wish that just ensuring enough food passes the patient's lips will be enough to lead to a cure. Instead, patients feel exposed and avoid families rather than submit to being constantly watched and criticized. The most effective way to handle meals is to provide food the person feels comfortable with, allow her to choose and eat as she wishes and simply ask if everything is fine. Giving her the freedom to act like an adult will be most encouraging while watching her at every meal only reinforces the eating disorder.

Families understandably want a clear treatment course with a definite prognosis and endpoint. The process of getting better from an eating disorder is a much more complex road. The exigencies of stabilizing the body and mind to relearn how to eat normally and how to function as an adult without the security of the eating disorder rules are cumbersome. The path to recovery involves many ups and downs and demands a resiliency to weather the tough spots and remember the light at the end of the tunnel. It's extremely difficult for the patient, battling daily in the trenches, to see any light at all. One of the most helpful things families can do is to reinforce the need for patience and to remember treatment is a long, arduous process. Believing in the family member even at the toughest of times reflects a level of confidence and love that endures and strengthens her resolve each day.

By focusing on the positive steps and remaining steadfast on the hard days, families express a sentiment that an eating disorder has surely eroded over the years: trust. The shame of being sick pushes patients to sneak and lie and leads families to question this person who had always been seen as trustworthy and reliable. The internal, critical thoughts of an eating disorder only get stronger when families decide they can no longer trust. I routinely suggest families learn to distinguish the hiding that comes with the shame of being sick from one's true character. Re-establishing trust can make the difference between a full recovery and a partial one. When families work hard not to criticize and blame but instead to forgive and love, the effect on the course of recovery is immeasurable.

Practical Steps to Fight Obesity, Part III

Even if parents understand the message about food and weight that can help their kids, it's not clear how to reinforce it. One way parents date themselves is how they discuss the role of television in their family. It's especially quaint when the smug ones boast about not having a TV in the house at all, as if they've risen above the riffraff to aspire to new cultural heights.

But the statement "I'll never let my kids watch television," once considered a critical element in defining ones family, is meaningless today. Sure, television still matters but only as one of many forms of entertainment. At least for now, the internet age has turned us all into consumers of content, however it gets into our home. And that's a fact for no one more than today's kids.

Children no longer need to wait for their favorite show each week, now it's instant gratification. Content in all its forms is available on every electronic gadget in the house and in every possible form to rope in a child. Perhaps even more troubling to adults who aspire to TV-free households would be the definition of content today. Scripted shows, reality videos, YouTube and movies all clearly fall into the content category. What about novels and news outlets? What about research, which, to kids today, constitutes creative googling or emailing questions to an expert they find online? When the only successful internet business model is based on clicks, a website will do whatever it takes to lure readers or viewers. As the line between knowledge and content blurs, there's no easy way to eliminate entertainment from the house. Every bit of information comes with an ulterior motive. It's all content now.

Advertising clued into this new opportunity long ago and capitalized on the easy access to children's minds with, not surprisingly, problematic results. The business goal was to rally children to ask parents to buy products, but the actual effect was to inculcate the suggestible with misguided information. The repercussions of the advertising onslaught were profound, note the toy fads and growing tween culture considers critical to the economy, and not challenged by alternative messages until decades later.

Public health spots and non-profit campaigns, the first alternatives were no competition for advertising. The ideals of consumerism and a free market even for children persisted. However, more recently, the creative freedom allowed by exponentially growing content outlets led some forward-thinking creative types to make shows intended to teach children ethical and moral lessons. These shows are so powerful that kids use and apply the information in school and at home.

That I know of, these lessons, easily tolerated by parents, are from the bottom of the creators' hearts. Among the messages are kindness towards others, tolerance of difference and self-respect. Sometimes the messages are more concrete like do your homework and clean your room. On that list a common theme is eat healthy food, but the message to eat more carrots, as I have written many times, has no real impact on how children learn to live in the world of plenty. 

The last post explained the new paradigm adults can use to teach children about food, weight and identity. The content children consume must reflect the same values to compete with the extant pressures from advertising and the drive to be thin. Older shows like Sesame Street and Mr. Roger's Neighborhood were primarily educational and aimed at younger children. A new genre for older kids provides ready-to-absorb values to take into their world. Coming from coveted content, children accept this information much more readily than anything parents might say. Ironically, content provides an opportunity to challenge what kids learn in the world of plenty.

The momentum needed to start a shift in children's content about food and weight already exists. I began this blog almost three years ago in response to desperate emails from confused parents unsure where to turn for help with their kids' eating. Those emails keep rolling in. As many have told me, it's a full-time job just to get some worthwhile advice. The faulty paradigm of eat less and move more reinforces the problem. As the internet economy attracts the bright, creative minds today, content could quickly spread a new thought process about food and weight to kids, which if accompanied by adults and peers who feel the same way, might start to undo the toxic climate in the world of plenty.

The new approach to food and weight has three simple points. What you eat and how you look do not determine the person you are. In other words, it takes years of growing up to figure yourself out and there's no magic fix, including food and weight. Eating is about pleasure and sustenance. The body needs a variety of foods to survive, and human culture has long connected food with enjoyment and connectedness. Last, kids need to dissociate eating from good and bad behavior. Eating is only about eating, and praise and punishment must be separate from food.

The message is clear and simple. More importantly, rather than attempting to refute the years of successful advertising, this paradigm creates a new way to incorporate food and weight into kids' lives and minds and perhaps a new way to spread the word.

Practical Steps to Fight Obesity, Part II

The conclusions of the last few posts about the obesity epidemic are sobering and perhaps even bleak. The causes of the problem are systemic and deeply embedded in our culture. A drastic change in lifestyle by returning to the era before processed food, agribusiness, the drive for thinness and chronic dieting is highly unlikely. The expectation of an immediate solution to weight loss via surgery, crash diet or miracle pill is pure fantasy. The solution is a hard road through moderation in food intake with reduced expectations for the future. That doesn't mean quick weight loss followed by stabilization but instead slow, steady, sustainable change.

Most epidemics spread horizontally, through a generation, both old and young, and must be contained from sweeping through an entire population. This one grows vertically. A child needs to be taught by adults, peers and advertising how to engage with the world of plenty, how to become obese. The challenge to care for the currently obese isn't enough to stop this epidemic.

The real hope lies with helping future generations avoid the same fate. The current world of plenty may shift slowly over time but not fast enough to save today's youth. Without tools to avoid this fate, children are mere fodder for the societal forces that lead to obesity. Adults and public policy must know what to say and what to do in order to make a difference. The perils of processed food and mass marketing are dire but invisible to kids. They need to be convinced that there's a different way to live around all this food.

Practically, direct education and public health initiatives aimed at children don't do the trick. Certainly, some obedient children will respond to information as law to live by or to fear-based propaganda as horror stories to avoid. However, the innate propensity for children to test adults and rebel against authority will make food rules just another set of parental edicts to disobey. Getting into the minds of children takes somewhat more creativity. Two points are essential to make a difference with kids: educating parents and adults how to talk to kids about food and weight and getting into children's heads through content they'll listen to.

Both parents and public health administrators need to be aware that the teaching points available to educate children are ineffective. Eat less, move more and learn "healthy eating" facts--the trifecta of food education--neither change food behavior nor lessen the risk of obesity. Cooperative, motivated adults are fonts of nutrition knowledge yet find that knowing what to do has no effect on their own behavior and weight. Children, moved more by the innate urge to pick the poison apple, will take on food rules as a challenge to either squeeze extra sweets from exhausted parents or sneak them at any opportunity. The simple education model is a boon to the food industry. Sophisticated marketing and advertising trounces any earnest public health campaign.

Children are all instinct and emotion. The tack of using logic and reason to change clearly preprogrammed urges is hard enough for adults and unrealistic for kids. But there's one thing business already knows: the malleable minds of children are open to suggestion. And much of what draws children in to focusing on food and weight is the promise of a secure identity.

The basis of a child's personality is largely genetic, but the birth of identity forms around relationships. In other words, we are born with many character traits that define how we react to the world, but only by engaging with the world do we learn how to perceive ourselves. Personality doesn't come with a guidebook. Other people provide the feedback to form identity. Self-awareness is a gradual dawning over years that reveals our mental perception of who we are.

In childhood, the powerful desire for an identity comes with the urgency to feel instantly fully formed. Food and weight, the overarching obsession of this generation, is an easy barometer of identity. That can be the kid who eats anything, the kid who doesn't eat, the kid who is thin or who is fat. But food and weight can provide instant identity.

Accordingly, the practical first step is to teach kids to let food be food. Children can't learn food choice is related to good and bad behavior or be praised for eating in any particular way. They can't believe they are special because of how they eat or how they look. They can't learn to associate guilt with dessert or that eating is always a shameful act. They must learn food is necessary for life and a regular part of every day, that meals can be enjoyed and not scary and that weight is not a barometer of success and failure. They have to hear a new philosophy of food and weight every day and allow their internal search for identity bypass food and weight to look for different ways to see themselves. And they need to hear over and over again that it takes time to figure out who you are. Focusing on a quick fix like food and weight won't speed anything up. In fact, it doesn't work for anyone.

If this is the message adults need to teach kids, the second key point is how to get them to listen. That will be in the next post.