The Isolation of an Eating Disorder

Much has been written about the isolation created by chronic illness. Healthy people have the luxury to live as they please, or believe they will one day, and to dream about the future. Being sick takes away those gifts in a moment, destroying the pleasure of each day and allowing only the hope for survival. Although sickness highlights how precious each day is, that's no solace for the loss of personal freedom.

This pain is magnified when the sick person is young, and eating disorders are afflictions of youth. Adolescence and early adulthood, the typical time of onset of eating disorders, are typified by idealism, hope and brazenness. Even if the reality of these stages feels much harder to the individual, society idealizes the freedom of this age and cherishes the passage from childhood to responsibility and seeks to delay the transition as long as possible.

It's a bit easier when the young have diseases that instantly trigger sympathy and understanding, but for people with eating disorders, the loss is magnified further by the confusion surrounding these illnesses. Not sympathized with like cancer or dramatized like addiction, painful and destructive though they both are, eating disorders are the strange diseases when someone cannot eat. The general misunderstanding of eating disorders makes it easy for family and friends to ascribe blame to the sick person. The psychological and emotional torment makes little sense to the uneducated, and the refrain "just have a milkshake!" seems as likely a fix as intensive, and usually expensive, treatment.

Crossing the line from well to ill, early age of onset and limited public knowledge quickly isolate someone with an eating disorder. For a time, many people can hide their symptoms and suffering while acting as if they are fine, just like everyone else. There's a time, around the mid-twenties, when it becomes much more difficult to stay connected with the truly well. As social events typically revolve around food and as other people's lives progress in the way a sick person's can't, it becomes too hard to continue unfazed by daily life. The isolation, once internal, largely about feeling different, becomes external and much more real. The time spent alone burdened by the years of sickness, the years gone by and the hours still lost to the eating disorder symptoms become even more painful and isolating. The years of feeling so different from everyone else truly takes its toll.

Much is made of the medical and psychological treatment of eating disorders, but the isolation created by these illnesses brings an even greater need for people to get well: community. Fostering the growth of connectedness, of not feeling alone and of others who have tread the same path opens up a long sick mind to the hope of getting well. The shame that is a bedrock of eating disorders furthers the notion that these people cannot connect. The misguided fears of clinicians that patients will only egg each other on and worsen their symptoms limits potential friendships and bonds. The rules of some programs to curtail personal connections among clients serves to heighten the isolation. But connection and dependence on others strengthens each individual's belief that full recovery is possible. It's crucial the clinical field and national organizations not only support awareness but support building community.

There are several ways to build community and give hope to

the chronically ill with eating disorders. Probably the most common option is group therapy. The opportunity to engage with other ill people and therapists is often eye opening for people who've been so isolated by their illness. Seeing the similarities between themselves and others also afflicted makes it clear that an eating disorder is not a personal failure but an illness. 

Many programs hire therapists who have recovered from eating disorders themselves. Becoming close to someone who found a way to health is a powerful experience and makes true recovery tangible. It also helps people so alone in the disease see the larger picture of relapse, recovery and wellness right in front of their eyes. Encouraging people to stay in touch with therapists and clients after discharge solidifies the reality that a bonded community fosters healing and isolation encourages sickness.

The organizations and opportunities already exist to encourage togetherness to help people get well. The more clinicians help patients and families connect to community from the start, the more the message of true recovery will spread. A therapy team is a critical first step in treatment, but community is a lifeline that ought to be part of that first line of help. Knowing full recovery is an option within your grasp, and that there is a group of people behind that imperative, must be part of any initial steps to get help.

Killing an Eating Disorder with Kindness

The behaviors of an eating disorder are obvious, if confusing, to people with limited understanding of these illnesses. People either stop eating and lose weight or binge/overeat regularly and then try to compensate by purging or exercising or a variety of other measures. What drives these behaviors is much more murky.

But there is a reason eating disorders are classified as psychological. The maladaptive thoughts and emotions form the engine that drives the illness. The cure seems straightforward--to just eat--yet clearly that seemingly sage advice is ineffective in eating disorder recovery. The underlying psychological process makes the mundane chore of eating impossible. 

Describing the thoughts and feelings of an eating disorder is difficult. The specifics are confusing even to the most open-minded. We are programmed to view food and meals as necessities, like sleeping and breathing. Even for those trapped in the cycle of disordered eating, food isn't the enemy, only for those with eating disorders.

The level of fear, if not terror, associated with food for someone with an eating disorder is very heightened. The actual thoughts about food reflect as much: you don't deserve to eat; you aren't worthy of food; everyone else gets to eat, just not you. Facing food several times per day feels like going into battle. Since food and terror aren't linked for most people, these thoughts just don't make sense.

It takes a leap in imagination to understand the psychological prison of an eating disorder. We all go through our days with an internal thought structure about ourselves and our lives. These thoughts can range from positive to critical, arrogant to self-deprecating, conscious to mostly out of awareness. Our internal world affects how we live and decisions we make.

Now try to imagine one's mind hijacked by a powerful, harsh dictator. The resulting thoughts aim constant barbs criticizing everything about you, putting down every aspect of your life and insisting you're worthless and your life is pointless. These are the thoughts of an eating disorder. After reaching a crescendo of punishment, this internal monologue insists on retribution to confirm how awful the person is, namely either by restricting or binging. The harsh thoughts are the driving force of the illness and make the suggestion to just eat, as if it were that simple, absurd.

Once the psychological suffering of an eating disorder is clear, the actual help and care the person with the illness needs shifts markedly. These punishing thoughts are not the thoughts of the person who is ill but the symptoms of a disease. And when a person is bludgeoned by constant punishment, the instinctive reaction at first is to fight but, without any success time and again, it is to cede power and just to try to survive.

The most effective tool to counter the punishing thoughts is kindness. A period of being punished and being alone leads the person to crave kindness and compassion. Often uncomfortable at first, regularly receiving kindness offers an alternative to the punishment of the eating disorder. It reminds the sufferer of a forgotten way of living in the world and of how to reflect on oneself. It opens a door to a life no longer dominated by punishment and starvation or binging.

The protracted course of an eating disorder actually leads family and friends to frustration and, if anything, harsh responses. Years of watching the person stay sick with multiple aborted attempts at recovery prompt anger and resentment. It's hard not to believe the disease is self-inflicted, the grief of lost time self-pity. It's a logical step to interpret the internal punishing thoughts as a sign of not wanting to get well, not as the symptom of a relentless illness.

These false assumptions only isolate the person more, thereby strengthening the illness. Alone with the internal dictator, the ill have no chance at recovery. The education of loved ones must include two steps to help them provide needed support.

First, the psychological component of eating disorders needs to be reinforced repeatedly. The behaviors may be clear, but the punishing thoughts are too hidden and too powerful to be ignored. It's essential to understand how the thoughts function and to see them as symptoms, not self-sabotage.

Second, families and friends must understand that the only successful counterpoint to criticism is kindness. Regularly asking how she is doing and how you can help goes a very long way. Offering regular support without judgment means more than words can say. Sticking it out with her even during hard days and weeks can weakens the internal dialogue. The outside pressure of kindness can speed up a recovery more than almost any other personal support.

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.

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.

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.

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.

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.