1/25/13

The Biology of Starvation


Most patients remember one specific event as the initial trigger for their eating disorder. For people who get well in the first few months, the story of the illness stops there. But after even just six months of taking over someone's life, the eating disorder often takes a different course. What started the disease is very different from what lets it continue and worsen over time. In the end the factors that perpetuate the eating disorder easily overshadow the initial event. And one central but easily ignored factor is chronic starvation itself.

Most treatment for eating disorders focuses on both the need to maintain a meal plan and the psychological/emotional issues. However, treatment teams typically separate the duties. The therapist ignores food to focus on the underlying concerns. The nutritionist handles the meal plan. And the primary doctor monitors medical stability. This approach may be thorough, but no one considers all aspects of the illness and thus can't see the entire picture. Without piecing together the psychological and physical, no clinician has a birds eye view of the treatment. No one considers the biological results of starvation.

The doctor would be the team member most likely to recognize this problem, but it's no surprise doctors can't see it either. The Western medical community knows little about chronic starvation. Although many people in this country go hungry, few truly starve. Chronic malnutrition isn't a regular occurrence in the first world. It only occurs in severe, terminal medical illness such as cancer or dementia, at the end stage of these illnesses when palliative care is paramount, and in eating disorders.

Although treatment has come far in the psychological and nutritional approach to eating disorders, few practitioners, academic texts or new therapies focus on the biology of starvation. The development of new treatment follows trendy therapy modalities and new pharmaceutical options, but the medical community remains uninterested in the biology of eating disorders.

The body's adaptation to severe, prolonged malnutrition is profound and powerful. Organ systems will go to great length to survive, and energy conservation is so elemental and complicated that many doctors are stumped by test results in the severely malnourished. Moreover, these adaptations have a psychological component too. Although cognitive function declines in the malnourished, all remaining brainpower focuses on food: obtaining it, savoring it, hoarding it, and of course devouring it.

It's no coincidence that these obsessions are all fundamental symptoms of eating disorders. Ironically, the adaptations which enable the ill to survive may also be the foremost reason people with eating disorders stay trapped in their illness. In other words, many symptoms of eating disorders are the result of starvation, not, as most assume, the other way around.

A look at the basic science of malnutrition helps clear up this confusion. The body suffers three losses without food. First, the sheer lack of calories leaves insufficient energy for the body to function. Second, the body repairs all tissue and organs daily in order to remain healthy, and the lack of variety of nutrients means there are no building blocks to use for repair. Third, the body is constantly dehydrated not because of limited water intake but because of the metabolic changes in starvation. In order to create more energy, the body metabolizes muscle. The chemical pathway to metabolize protein uses water, thereby depleting supply and causing chronic dehydration.

In essence, starvation triggers destructive changes in body function to increase the chance of survival. The three aspects of being malnourished cause widespread damage in all organ systems. The inability to do needed daily repair and the metabolism of tissue for energy leaves the body depleted, only to function at a suboptimal level on backup generators. Forced to survive on very little sustenance, the body hijacks the brain to focus on only what's necessary: food.

The biology of starvation complicates current treatment for eating disorders. When treatment is divided between clinicians, the role of starvation isn't obvious. Therapy working towards the underlying cause for the eating disorder won't address that chronic malnutrition drives the eating disorder thoughts and behaviors. The brain and behaviors have programmed responses to starvation which closely resemble eating disorder symptoms. So for someone chronically starved, these obsessions with food ensure they find and eat any food available. They no longer represent a wish to avoid circumstances or emotions in life; they are a biological response to mortal danger.

The typical result of incorporating the biology of starvation into treatment is twofold. First, it absolves the patient of a large portion of blame. Recognizing that many eating disorder symptoms result from starvation helps the person realize that significant improvement will come from eating, and the goal is to find the environment where that's possible. Second, it eases the pressure to focus on the intensive therapy until starvation is no longer the driving force of the illness.

Furthermore, basic knowledge of the medical factors in these illnesses would help educate families, clinicians and doctors in the true tenacious, destructive nature of eating disorders.

1/18/13

Weight and Eating Disorder Recovery


In a successful recovery, weight plays a very complicated role. On the one hand, the obsession with weight is a core symptom of the disease, a preoccupation the mind of the ill person. For clinicians, restoring and monitoring weight remain one of the best indicators for continued health and progress.

These distant poles of illness and recovery can play a demoralizing game of tug-of-war between encouraging the eating disorder and maintaining recovery, especially if the therapist isn't careful. Striking the right balance between monitoring weight and staving off obsession is challenging. In the end, treatment needs to gradually relegate weight to a less important status in recovery and identity, a tight rope walk that's critical to free someone from the prison of the eating disorder. 

Weight is not only the focus of people with eating disorders but a national obsession. The public health obesity crisis, the media focus on thinness and the universal reach of the diet industry all point to the endless public appetite for weight obsession. The universality of the focus on weight applies to clinicians too: no one is immune.

So when a patient expertly couches their pathological weight obsession as if it were within the norm of society, it's too easy for the clinician to fall into the trap. The conversation can become familiar, casual, without sensing the danger. The result is the patient feeling validated: yes their own weight obsession is normal. They aren't really that sick.

Similarly, living with an eating disorder in today's world encourages and rewards successful weight obsession. Weight loss invariably leads to an endless string of compliments. Weight gain by someone who was underweight triggers the rounds of "You look so much better," as if weight gain were synonymous with full recovery.

Even treatment providers can't help but acknowledge and comment on weight as a marker of success or failure. No matter how much it's explained that recovery is not about weight, society says otherwise. In fact, weight appears to be the only way people are able to understand these confusing psychological illnesses. It's much clearer to discuss weight than to understand why someone cannot eat.

The best path for recovery is somewhat counterintuitive. Once weight isn't at a dangerous level, ignore it. Focusing on weight validates one core belief of the eating disorder: the number on the scale is the most important marker for success.

Since the goal of treatment is for life to become meaningful, that powerful number must be devalued right away and regularly. The only value of weight in therapy is as a marker of health, but tracking meals each day and monitoring variety and intake of food, though time consuming, is much more valuable. Health is connected with nourishment, not weight. Following the number more often reflects too simple an approach in treatment and at times too punitive a stance if weight is used to measure progress, a mindset very much akin to the eating disorder.

Unfortunately, the treatment team may find a false clarity in following weight when the best tracking is a lot more ambiguous. If any eating disorder treatment appears that simple, something is wrong. In fact, therapy requires complexity and ambiguity, two qualities most challenging to the ill person, to demystify the simple yet destructive rules of an eating disorder. Any treatment relying on such a simple marker of weight has little chance to succeed and is likely playing into the hands of the illness.

To avoid the pitfalls of weight, it behooves the therapist to explain the role of weight in recovery right away. Weight only matters if it's at a dangerous level and thus a clear sign of severe illness. That's mostly the case if someone is in inpatient or intensive outpatient treatment. Anyone medically stable shouldn't have weight be the primary assessment of health.

It's essential to educate the patient and family that weight stability is only a small part of recovery. Health is a necessary prerequisite for effective treatment because the mind and body need to heal in order to change behaviors and alter one's life course. However, a therapist needs to quickly dispel the myth that normal weight equals recovery.

Putting weight in its proper place in treatment begs the question what does constitute the successful path of treatment. The answer lies in a series of complex tasks: face the challenge and emotion of eating each day, come to terms with the unpredictability of daily life, accept illness and recovery as an obstacle to living more fully and, most importantly, search for people and things that make life much more meaningful than the number on the scale.

1/10/13

Modern Love Redux: Relationships and Eating Disorder Recovery


Well-respected media outlets have a tendency to conflate eating disorders with weight obsession and dieting. Granted, in many circles disordered behaviors around food and weight are now considered within the norm, but that's a troubling reality newspapers and magazines need not take at face value. It's frightening to imagine a world in which severe dieting or purging meals or extreme exercise are barely even something to think twice about, but here we are.

Meanwhile, journalists, striving to find a role, any role, in the internet culture, have latched onto the public craving for dramatic stories about personal struggles with food and weight and have, for better or for worse, received the attention they're looking for. 

A case in point is an article in the New York Times this past weekend. In the Modern Love column, a woman outlines her story from a lonely, eating disordered life to the happiness of marriage and the miraculous ability to eat again. She refers to her years of being emaciated alternately as a source of pride and as the pathological focus of her disease, never quite being sure on which side of the fence she belongs.

The rounds of purging and starving and secrecy are just part of her journey, swinging on a pendulum from disease to a mere stage of development. Can it be that her extremely low weight, one that merits hospitalization by any clinician's standard, is just another badge of honor? Even by the end of the story, the answer is never quite clear. 

Finding love is the next step in her journey, one that allows her to start eating again. She reluctantly admits to a more healthy weight while finally recognizing her eating disorder and starting to get help. Somehow, she thinks that neither her friends nor family had any idea she was sick, and that everyone thought she just looked thin and believed in the same delusion she did.

She writes about gaining weight but neglects to tell her readers whether or how her eating disorder symptoms have improved, furthering the fallacy that normalized weight equals recovery. She is grateful that a relationship awakened her to her illness rather than an ER visit or a family intervention, but the final impression is that she has been cured by a loving man, a dangerous conclusion for her readers suffering with eating disorders.

At first glance, there certainly was something brave about writing this story. I applaud someone willing to confront the secrecy around her eating disorder and let others see that there are paths to improvement and recovery. There is no doubt that this woman has found more peace in this relationship than she had prior. However, writing an article for a platform as widely read and as influential as the New York Times bears a larger responsibility.

The writer and the editor must understand that the readers most interested in this article are those either afflicted with an eating disorder or the family of the loved one who is ill. The unwillingness of the writer and newspaper to directly address the realities of her severe illness and the medical consequences, let alone possible mortality, of the starvation and purging sugarcoats her suffering. Couching her disease in a love story allows other sick people to identify with her and just hope for the right man to come along in order to get better.

To confuse the situation further, her central message is one very much accepted in the eating disorder treatment community. Meaningful relationships in the world are critical to recovery. The reality of these illnesses is an inward preoccupation with food and weight which intrudes upon personal relationships. Finding connection, caring and love helps speed up the process of getting better but isn't a cure. In that vein, she really got it right.

In order to get through to her readers, the writer needed to face her own fear and be more honest. She needed to name her illness and speak more widely and knowledgeably to her audience. Revered outlets like the New York Times provide critical exposure for eating disorders but have a responsibility not to turn severe illnesses into a rite of passage or a modern-day fairy tale.

Even if a story is likely to draw in readers, the editors need to consider their role as educators about these misunderstood and difficult to treat illnesses. The writer's flippant yet self-deprecating comments about her weight both trigger obsessions for people with eating disorders and propagate false beliefs these illnesses. She ought to know better than to throw frighteningly low weights around several times in her article. People in recovery have a responsibility to state the facts about their disease, confront the bias and stigma and help others understand what constitutes effective treatment.

12/20/12

Eating Disorder Recovery and the Holidays: a Tough Time for All, Part 2


The holidays are a time to celebrate and be together. Despite the pull towards old and often difficult dynamics, most families crave an easy, calm few days. The presence of a chronic illness that is difficult to treat makes the time much more challenging. This isn't the time to stage an intervention or ignore the member with an eating disorder completely. Instead, the goal is to comfort her and provide support and love and try to create an environment of celebration while acknowledging and being sensitive to this family member's struggle.

Preparing for the holidays with openness and communication also opens the door for education. It's very likely that the family is not aware of the details of their daughter's treatment and recovery and, without clear proof of a full and instant recovery, i.e. completely normal eating, assumes that she is not doing what it takes to get better.

The path to recovery is often long and slow, and families may use the holidays as an annual marker of disappointment. When family members express these feelings, the result is a damaging conversation that casts a pall over the entire time together.

Any concerns are best addressed at another time and often with help from the person's therapist. This is not a time for a complete referendum on the treatment process and path to recovery. Families can broach that large topic without the added pressure of the holidays. In fact, if the person with the eating disorder can ask the family to avoid the topic of recovery in advance, the holidays will proceed much more smoothly. 

But complete avoidance of the topic is just as uncomfortable. Pretending that nobody is aware of the ill person's struggle with food isolates her from the family too. The result is feeling alone and unloved, a very common trigger to return to the eating disorder symptoms for comfort. The typical pattern for families is to reach a state where every conversation about food and the eating disorder leaves anger, disappointment and hurt in its wake. Left without other options, the family resorts to silence and allows the sick one to suffer alone with her illness.

Is a family stuck when discussing treatment or ignoring the illness aren't viable options? What can caring family members do to use this time together to show her they are on her side and want to help? What can make this time easier and perhaps even enjoyable?

The most caring approach a family can take during the holidays is one with love and compassion. Eating disorders are relentless and punishing illnesses. The intense, internal pressure to follow the rules of the eating disorder weighs heavily on the patient's mind and is followed by powerful, degrading thoughts. The imperative to try to avoid any symptoms during the holidays ends in even more punishment and a sense of failure unless everything is perfect. Countering the internal pressure with kindness and love is the foundation to hopefully create a different holiday together.

In practice, the role of other family members is straightforward. Ask her if she is ok and then wait patiently for a response. If the answer is "I'm fine," then ask again until she understands you wanted a real answer. Ask if she needs anything and when she says no, offer something small, such as going for a walk or watching a show together. When the meal comes around, take her aside and let her know which foods have been included to help her feel more comfortable. Offer to make her plate or to sit next to her during the meal. Extending a hand of comfort, solace and love will mean the world to her and will reinforce in action, not just words, that she isn't alone.

If a family can suspend fear, anger and judgment and remember an eating disorder is a difficult illness, the holidays can be a time of peace and love. Spending some time discussing in advance both what food could be available and how to approach the meals can help avoid much of the pressure felt at the most pivotal moment. Similarly, advance planning around appropriate discussions during the holidays will go a long way to bridge the isolation caused by the eating disorder. Most important, kindness, love and compassion, all facets of what the holidays mean, are critical ways to treat the sick family member to help her feel loved and less alone.

12/14/12

Eating Disorder Recovery and the Holidays: a Tough Time for All


The holidays are perhaps the hardest time of the year for people in recovery from an eating disorder. The combination of time with family and the focus on food with little distraction makes for a very challenging few days. Working hard to follow a meal plan and enduring the internal struggle between eating and trusting the eating disorder is hard enough. The next two posts will present guidelines to take some of the stress out of the holidays for people with eating disorders and their families.

Families tend to return to old dynamics this time of year. Living together once again under the same roof, often where the children grew up, immediately brings back the experience of times past. Accordingly, instinct and circumstance triggers familiar situations and emotions for all.

An ill-timed comment or an off-kilter glance can ignite old reactions in a split second. The process of forming new, adult dynamics takes time and isn't ever foolproof. Usually only the introduction of new family members, the aging of the older generation or a serious family illness, like an eating disorder, are sufficient to break these patterns.

None of the family dynamics bode well for the family member home for the holidays while in the throes of recovery. It's much more common than not for someone with an eating disorder to have lived at home at some point in the first few years of being sick. Lost in the illness, the patient was inevitably restricting or binging and purging at home and hiding the symptoms as much as possible, a painfully difficult time for someone with an eating disorder.

Families, clearly scared and worried, in all likelihood monitored their daughter's eating constantly and tracked progress or slips, all the while hoping their vigilance would help. Often any previous dynamic transformed around such a devastating development in the family and all attention shifted to the ferocious illness in their midst.

All together again, the family is likely to adapt its interaction around the eating disorder once again.

The scenario during the holidays is predictable. Families will check every morsel of food their daughter eats while trying to gently urge her to eat a little more. Trapped, she will get angrier and angrier and feel terribly judged: a situation that always worsens symptoms. Faced with the prospect of no privacy, no access to alternate coping mechanisms and food as the sole emotional outlet, she will feel the powerful tug towards disordered behaviors. All well-meaning plans and actions to start the holiday will be quickly challenged within the first few hours of the family reunion.

The real question is how to address the concerns in advance, including backup plans when things go awry, rather than fall into a tense situation with nothing but old patterns to fall back on.

The first and most critical step is to be sure the issues are up for discussion early and often. Without a forum for openness, the holidays will inevitably return to old form.

It takes courage for the ill person to acknowledge her fear and state clearly what she needs to make the visit more successful, especially when there's no guarantee how well a conversation will go. She is typically so used to hiding symptoms at home that this default scenario feels like a much easier route to take, despite the inevitable pain, anger and confusion that will follow.

Acknowledging how difficult the trip may be will make her feel vulnerable in many ways: exposing continued risks for slips or relapse, risking offending family members, and opening avenues for unsolicited opinions about her treatment. Still, the conversation is crucial to head off the likelihood of misunderstanding and anger in the moment and of reinforcing the emotional distance after the trip is over.

A few parts of recovery will need to be out in the open to make a more honest discussion possible. The person has to speak about what food is possible to eat and what isn't. She has to explain to some degree that, holiday or not, it's critical for her to follow her meal plan because straying is likely to lead to worsening symptoms. She also has to try to ask for support and help in preparing either the food available, her plate at holiday meals or both. The stress of facing a table of food all of which is too scary to eat or of serving herself food while everyone watches what she takes is overwhelming. A family member can easily lower the stress by planning in advance to have food she can eat and to offer to help arrange a plate of a safe amount of food. Spreading the word for the family to work hard not to monitor and comment on her food can go a long way to make the visit more successful. These practical steps send a message to the family as a whole that things will go differently this year.

Once the ground rules about food are set, the family needs to agree to which conversation topics are appropriate for a holiday visits and which ones are better left to a less emotional time. That's the topic of the next post.

11/30/12

How Therapy Separates Identity from the Eating Disorder


The process of separating identity from an eating disorder is not an intellectual endeavor. All discussing identity will do is lead to a stalemate. The illness dictates the person's every move and decision, like an oracle or a master, so discussion may be interesting but largely distraction. Moreover, perspective on one's identity is hard to come by, especially when that person is in the throes of an eating disorder.

Change will only come from action. Reinforcing the behaviors that go against the eating disorder will highlight the internal conflict between the illness and the person. No amount of discussion can make a person more aware of the powerful identification with the eating disorder than to disobey it.

The food journal, which I discussed in a post a few years ago, introduces a way to contradict eating disorder rules quickly and powerfully. Writing down meals and the rational and emotional responses to them has two immediate effects: engaging another person in the intimate details of the disorder and presenting the disorder as something separate--physically a piece of paper or an email--from oneself.

Even someone's initial reaction to the suggestion of a journal exposes the power of the illness and the fear of confronting it. Some people cannot even start the journal; some only write it for a few days while on "good behavior;" some write food but omit feelings; some write for pages and pages; some are shocked by the effect of letting someone else into the eating disorder. In every case, the effect of the food journal is indicative of how connected the person is with the disease and of the challenges that lie ahead to separate identity from illness.

At many points of treatment, the therapist has to point out new concrete steps to take such as adding in more food or adding in extra treatment. Invariably, these suggestions meet resistance. The patient knows more changes equal more time spent on recovery and more emotional turmoil. Anyone's instinct would be to push back. The therapist's job at these moments is to insist that these steps in treatment are a joint decision. The patient has to take partial responsibility for any change in treatment and to clearly state that her own intentions are different from those of the eating disorder. If the person believes the changes are enforced by the therapist, it's too easy to cling to the identity of an eating disorder. Over time, a sign of identity separating from the illness is the patient initiating discussion about new changes in behaviors.

Although certain moments of treatment are touchstones that highlight the struggle to wrest identity from the eating disorder, successful treatment is a long process. Years of embracing the eating disorder, as captive finds solace in captor, doesn't make separation easy. Even as the treatment makes clear the need to pull away from the illness and find new comfort elsewhere, it's hard to say goodbye to what had been the core of your being. Accordingly, the struggle between  actions that reflect the eating disorder's wishes and those that reflect the person's persists in a long, drawn out battle, with days and weeks leaning one way or the other. The pressure in treatment to stay the course needs to remain firm in the face of the difficult internal struggle the patient must endure.

The growth of a new identity is a slow process but it works. The immediate experience for the patient of letting go of the eating disorder will often be blankness, nothingness. Understandably, that will trigger intense fear and a desire to retreat to the illness and what is known. Even the therapist may despair at times that treatment may not follow the path to recovery. Those times of worry and fear are a standard part of treatment. Those moments aren't a sign of failure but rather signs of the challenges of recovery. Reminding the patient of the process of separating from the eating disorder and learning how to eat and forge a sense of who you are and your life course takes time. The uncertainty may be frightening but experience has proven that the effort of intense personal work bears fruit. Decades of eating disorder treatment shows that finding yourself in treatment pays off with a new and satisfying way to live.

11/20/12

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.