The Plight of the Powerless Family: An Adult Child with a Chronic Eating Disorder

Families frequently reach an impasse when struggling to help an adult child with an eating disorder. Seeking treatment for a child is easier simply because the law is on the family's side. There is no barrier to stop a parent from ordering a child to get help.

However, an adult can make personal decisions and maintains that legal right even when sick. The parents' only recourse is to involve the court, a desperate and usually ineffective and destructive act for the family in this situation.

Unlike other psychiatric disorders, forced treatment does not restore the thought process that enables recovery. Physical wellness helps by mitigating starvation, but that is not enough to lead to full recovery. Even the sickest patient will struggle with the eating disorder thoughts once fully nourished. 

Parents will frequently contact me under these circumstances asking for guidance. Typically, these families have tried to help their daughter for many years, seen little progress and have gradually lost hope.

Lost in years of illness, often never nourished and well for more than a few months at any time, the child only knows the physical and psychological state of being very sick with the eating disorder. As a clinician, I can see that any path towards recovery is a long one, but that does not mean all hope is lost. 

The choices a family faces in these moments are not easy. The key point to remember is that any steps forward must include both physical and psychological healing--eating and compassion--in order to have any possible chance of success.

Eating without compassion or compassion without nourishment seem to almost always falter. Steps towards recovery even for the chronically ill must take into account all aspects of the disease to lead to real progress. 

The advice I give is general because each person and family is different, but I always emphasize the message that any positive step must include both parts of recovery to be of any value. The family must remember how much their child is suffering at the hand of a vicious illness. Blame and hopelessness reinforce the power of the disease. Compassion and care leave open the door towards healing. 

Families often end up stuck in a few similar situations without any sense of how to proceed. What ties these family struggles together is the powerlessness of the family to help the child take a step towards getting better. 

Sometimes the child ends up minimally functional and totally dependent but refuses any further treatment despite an incredibly limited life. Here the eating disorder has had a devastating effect on the child's life but has also built in the kind of powerlessness and fear that overwhelms any attempts for change. 

Some adult children with eating disorders can have a somewhat functional life, with financial support, but have cut off all personal and emotional ties. Many parents in these circumstances pull away and largely give up but may still, in moments of urgency, try to help in more dramatic ways. 

Some children end up with a highly functional professional life and an increasingly limited personal one. The severity of illness is often hidden from most people under the surface of work success. The family tends to be much more aware of the problem but has no recourse to help. 

The extremes of response tend to be the most common ideas a family with chronically ill adult children consider. These include completely giving up or creating an intervention to force treatment upon the adult child, including the threat of legal action.

The next post will address why these approaches won't work and how a family can take steps to help an adult child with an eating disorder.


The Aloneness of an Eating Disorder

People suffering with eating disorders frequently talk about being alone. This experience is different from loneliness and also from the way most people experience being alone. It is best explained as isolation from the world by the symptoms of the illness. 

The issue is not related to being with other people. Often those with eating disorders feel more alone in a group of people than when they are physically alone because the illness makes them feel so different from others. The underlying concern is about feeling connected with others. The illness reinforces a need for independence but really interferes with any real connections in life. 

The thoughts and symptoms of an eating disorder effectively isolate the sufferer in many ways. The inability to eat regular meals makes socializing, which almost always involves food, a very difficult experience. The domination of one's thoughts by food and anything related to food leads to difficulty sustaining relationships because interaction with others necessitates the ability to engage on many topics and emotions, not just food.

The shame and fear connected with the eating disorder means that the openness and vulnerability of a friendship appears impossible. Last, the eating disorder symptoms lead the person to crave time alone when they feel calmer and safe, even though that time is dominated by the thoughts and symptoms of the illness itself.

For the person struggling with an eating disorder, the aloneness is painful but feels necessary in the circumstances of life. Pulling out of that place of being alone, no matter how strong the desire, seems impossible. The exposure and fear that would come with personal connection grow to such a degree that most people build an emotional and psychological wall to keep others out. It also keeps them locked inside the prison of the illness but there does not seem to be an alternative. Confronting that helplessness is challenging. 

A large part of recovery is to learn how relationships work in the world. There is such a focus on independence as a measure of success in our society, and that often misguided explanation of personal growth only fuels an eating disorder. 

The maturity of an adult certainly invites a measure of independence and resilience yet also necessitates important, trusting relationships in which people rely on one another. Learning how to trust others is a critical part of recovery. The difficult step is to recognize that independence using the eating disorder to cope is not maturity at all. It is an intellectual justification of the illness. It is largely denial of the severity of the symptoms and disability.

Dependence on others is not a sign of weakness but instead a part of being an adult. It is the way people cope with the challenges of life. And it is one of the most important parts of the escape from the prison of an eating disorder.


An Adult's Guide to the Overweight Child

Many parents or adults find it challenging to adjust to the transformation of a child's body into an adult's. We all have certain psychological and emotional associations with a child's body that shift markedly as that child grows up. There's a dissonance people experience between the feelings towards a child juxtaposed with the child physically looking like an adult. Too difficult to manage emotionally, adults hope that ignoring the change will make it go away. 

Similarly, the way a parent reacts to the idea of an overweight child is much different than reacting to a child one knows or a child of one's own. Adults, in a hypothetical situation, would easily brush off the idea of a child on a diet. We can all quickly realize the detriment of teaching a child about restricting food, and my recent posts to this blog highlight the dangers of dieting. But what happens when this is a child you know? Or if it is your child?

There is so much media attention to child and adolescent obesity that a child one knows on a diet might feel appropriate, the risks outweighed by the fear of obesity. For some parents, having an overweight child may even signify a sign of failed parenting. Then, in a much more personal situation, a diet might not be so absurd after all but a needed step to right a wrong. 

Rather than reflexively jump to a diet, an adult needs to survey the entire situation. Not only does a diet run the risk of triggering a starvation response and perhaps even an eating disorder (as explained more fully in the last two posts), the diet also sends a message to the child that he or she is doing something wrong: their weight is a personal fault that needs to be fixed.

Body weight and shape are largely fundamental aspects of body both genetic and based on developmental stage. Fully assessing the child's situation is already a way to put weight and shape in its place and not give them too much importance. 

The first step is to assess the child's general food intake and exercise. If the child eats normally for that age and within the norm of most children, then it is a fair assumption that the child's diet is not an issue. Similarly, if the child's physical activity falls within the norm then that is also not relevant. It can be surprising for adults to realize that children all of whom eat about the same amount and types of foods and engage in moderate activity can end up in a wide range of body weights and shapes. Many factors affect what anyone's body looks like. The goal is health, not some preferred body shape. 

The second concern is the child's developmental stage. For boys and girls, the few years before puberty can be a time of weight gain. Often this seems to be preparation for the vast changes the body is about to undergo. If a child gains weight around that time without any lifestyle changes, it is likely a response to development. 

The third critical piece of information is family history. If the parents or other close relatives have a larger shape, then it is likely the child will as well. If the parents gained weight at certain times of childhood, then it's not surprising if the child does too. In other words, the child has the parents' genes so his or her body will likely grow in ways that are similar. Punishing a child for having a similar body to his or her parents is paradoxical. The goal is acceptance of who we are, not pressure to be something different. 

An adult can approach a child's change in body weight and shape with reasoned, thoughtful questions. The reflexive jump to a diet sets the child up for self-doubt, if not worse, over time. Acceptance and self-worth are necessary goals for any child that clearly overshadow any goal of ideal weight and shape, which only seem to derail development and risk disordered eating and worse.


More about the Main Risk Factor: Dieting

After more thought and discussion, I realize that pronouncing dieting as the most important risk factor for a child to develop an eating disorder is both confusing and terrifying. To imagine that something so ubiquitous and considered fairly harmless could trigger an eating disorder can be quite alarming for parents. I thought it was worth writing more on the topic. 

Dieting is basically a self-imposed type of starvation. Originally, starvation started from a person's inability to find food, likely famine. Now starvation is often a choice; however, the body can't distinguish between dieting and famine so the lack of food triggers an innate biological reaction to survive lean times.

The initial reaction is universal and includes slowed metabolism, conscious focus on finding food and energy conservation. However, the long term effect of starvation is dependent on one's genetic predetermined response.

A small percentage of people are programmed to respond to starvation in a way that can precipitate an eating disorder. They can thrive on restricted food intake for long stretches, a boon for the species in the distant past but a clear hindrance in today's world. The eating disorder symptoms begin as an adaptation to a harsh environment, but, over time, the survival instinct goes awry and hijacks a person's life. Eventually, the obsessive thoughts about food combined with constant starvation become a way of life. 

The idea that such a basic mechanism of our body, namely hunger and fullness, can go so wrong is terrifying. Parents spend years feeding their children, assuring them their basic needs to live in the world. It doesn't seem possible that all that work can disappear suddenly and turn into a horrible illness. 

What's more confusing is that a diet, something so banal and innocuous, can be the catalyst. Most people take for granted that dieting or cutting back certain foods on and off throughout the year is a staple of modern life, a natural response to our world of plenty. For better or for worse, focusing on weight has become a right of passage into adulthood. No one expects dieting to last but instead comes and goes over the years. Having a scale in the bathroom is like having your toothbrush there. This is just part of normal adulthood, right?

The juxtaposition between the universality of dieting and the rise in eating disorders makes it clear that we are all ignoring an enormous risk. Adolescents are ripe for new experiences and change. The draw of a diet to transform their lives and help them create a new identity is very strong. The positive feedback from weight loss is addictive to vulnerable children. But if this step is so easy to make without any supervision, then all children seem to be exposed to the risk of an eating disorder. 

Food restriction triggers a body's adaptation to lean times. There is no way to know how a child will react to the change. A teenager's first diet can be the start of a long and harrowing illness. The answer to this problem is education: parents, adults and schools can counter the power of dieting by making clear the risks.  I'll elaborate in the next post.


Four Risk Factors for Eating Disorders in Children

The process of helping people recover from an eating disorder at some point returns to the inception of the illness. Many stages in personal and emotional maturing stop when an eating disorder takes over, and recovering means restarting that maturing process where it left off. 

There are many reasons why the trajectory of growing up goes off course into an eating disorder. Among parents aware of these illnesses and concerned about their children becoming ill, the fear of contributing to this transition is a common yet somewhat mystifying concern. Worried but misguided parents often focus on the wrong things while inadvertently contributing to the risk.  

Many important elements of raising children are in large part determined by the zeitgeist of the time. The trends of parenting that lead to what is considered properly raised children change from generation to generation. However, recent decades have shown that something in the culture is a part of the increased incidence in eating disorders. 

The rise of helicopter parents, intense competition between children for success and perfection at all costs has brought pressure on children at younger and younger ages and appear to contribute to the increase in eating disorders. These changes have largely wrought a childhood devoid of freedom and independence. Children follow strictly determined guidelines and struggle to find the space or time to figure out who they are while spending every waking hour trying to reach unattainable goals. 

A common thread for people with eating disorders is that the illness itself becomes the core of identity. The successes of manipulating food and weight followed by the increased attention, positive or negative, transform a child's self-image.

People often relate that the start of the eating disorder was a liberating and formative moment in their lives. The rules and structure of the eating disorder begin to feel like not just a triumph but a sign of true superiority. The guidelines of the eating disorder align with the expectations of the world around them. 

It was the first moment they felt as if they mattered in the world. Sadly, they had no idea where that moment would go.

On the other side of the timeline of the illness, the emotional struggle with recovery later in life reveals what kind of support and guidance may have been missing when the eating disorder first took hold, a treasure trove of advice for worried parents of younger children.

My implication is not that eating disorders are caused by parents. That is the exception rather than the rule. However, parents don't know the fairly common risk factors for an eating disorder and when it's important to step in.

The four central risk factors reflect four components of personal growth and self-determination in these formative years.

The first is the freedom of self-determination. The process of learning about oneself and feeling able to search for an identity without the undue pressure to prematurely be what other people want you to be. 

The second is a level of compassion towards oneself. The presence of a harsh, critical thought process in one's head can drown out any kindness towards oneself and serves as fuel for the start of an eating disorder. 

The world presents children this age with a sense that acquiring the perfect body is the most important life goal. Accordingly, children who become lost in the desire for that body conflate body image with self-determination and can easily find an eating disorder as a viable solution. 

The last and most important risk factor is dieting. The most common story for the inception of an eating disorder is a diet. The combination of dieting as normal behavior and the accolades that come after successfully losing weight is a deadly one. Eating disorder symptoms almost always start with the body and mind's natural response to a diet, and no one can predict how a child is programmed to respond to starvation. Being sure a child does not diet is the most important decision a concerned parent can make. 

Parents who focus on helping their child in these four areas will go a long way towards preventing eating disorders.  These suggestions directly contradict many of the norms of child rearing today. It's time the culture looks at the risks of current behavior and the rise of eating disorders.


Why Most Doctors Don't Help People with Eating Disorders

I had an unusual conversation with a gastroenterologist last week. She explained the situation with a mutual patient including the results of several tests, the likely diagnosis and treatment plan. That was all par for the course. She then asked my opinion, as someone who treats people with eating disorders, both for the best psychological approach to treatment and also for any other thoughts about possible diagnoses. 

This last question, one of collaboration and respect, is very rare in the medical treatment of people with eating disorders. What was just as surprising is that the doctor was not writing in the chart, taking to a staff member in the office or hailing a taxi while on the phone, all common occurrences during doctor to doctor calls. 

It is unusual to find doctors who have the time to talk, listen and collaborate. Patients with eating disorders need that medical approach to get help. Sadly, they tend to give up and ignore the issue rather than face the frustration of seeing doctors who are unable to find any reasonable cause for their symptoms. 

Medical problems associated with eating disorders are complex and out of the norm for a general doctor or specialist to see. One fundamental complication is that malnutrition both in terms of underfeeding and low levels of vitamins and minerals are central to the problem, something doctors learn next to nothing about.

The malnutrition is often different from general starvation due to lack of food. This malnutrition is specific to a world packed with food with no nutritional value. People will often eat some food but will have very inadequate nutrition.

Since doctors in the first world know little about the possible causes, they search for causes of illness as if the person does not have an eating disorder and ignore possibilities likely only to be seen in these patients. 

Any useful medical work-up has to include the expertise of a primary doctor or specialist and a doctor well versed in the medical problems associated with eating disorders to be effective. 

Many diagnoses are common for patients with eating disorders but otherwise would not come up on a doctor's radar: gastroparesis (delayed stomach emptying) that can be treated with food, kidney damage from malnutrition, odd mineral deficiencies such as low blood copper levels, high cholesterol from chronic anorexia and neurological swallowing difficulties from years of purging. 

The truth is that textbooks about eating disorders focus on the medical effects which occur in the first few months of starvation but not those that come after years of eating disorder symptoms. Accurate diagnosis relies on persistent doctors willing to collaborate and think outside the box to find an answer. 

The current state of medicine encourages short visits, minimal time spent on history and physical exam and no attention to detail. This situation leaves the patient with an eating disorder out in the cold. However, doctors like the one I spoke to last week can help create an environment that gives hope for better care.

For the patient with an eating disorder, it's worth looking into finding the right doctors and not settling for the most convenient ones. A doctor with time to think and collaborate will help maintain health through the process of recovery. A doctor who simply sends for a few blood tests will not help at all.


Why People with Eating Disorders are Experts on Nutrition

A common misconception about people with eating disorders is that they don't understand basic nutrition.  This confusion leads not only to misunderstandings but to mistreatment and even condescension to people with these illnesses. 

The crux of an eating disorder is the inability to eat food through the day and to allow one's body to digest food regularly. Feeding oneself is an automatic activity for everyone else, as basic as taking a shower or going to sleep, but that mechanism is broken for someone with an eating disorder. 

When people who eat without difficulty try to understand what has gone awry in an eating disorder, it's very difficult to wrap their mind around the basic concept of the illness. Accordingly, they assume that the problem lies in concerns they themselves struggle with, such as the health benefit of food choices or portion sizes of meals.

It's more apparent to people in general that education about nutrition might solve the problem rather than realize the issue is something much more profound. 

The reality is that people who struggle with eating disorders actually know more than almost everyone else about nutrition. In fact, nutritionists who specialize in treating people with eating disorders know that education is not their primary role in treatment. Their goal is to help someone in recovery relearn how to eat meals and snacks throughout the day while avoiding the pitfalls of eating disorder behavior patterns. 

People with eating disorders, desperate to find a path out of their illness, often obsessively research nutrition. Many of them end up studying nutrition and become excellent clinicians because of their depth of knowledge. Their hope is that a vast amount of knowledge might counteract the eating disorder enough to help speed up recovery. 

Sadly, this information may be useful but does not contribute much to recovery from an eating disorder. 

The rules and behaviors of an eating disorder don't follow logic or reason. It will never be reasonable to starve oneself through the day, eat an enormous amount of food at once, regularly purge one's food or overdose on laxatives to lose weight. The driving force for these behaviors is the illogical but powerful thought pattern of the illness.

Combatting the thoughts of an eating disorder with reason and education will never work. 

I have written many times that compassion, kindness and understanding are the centerpieces of treatment for an eating disorder and for the support one needs from family and friends. This is a far cry from nutrition education, and for good reason. 

People with eating disorders suffer from a punitive, strong internal thought process that makes them feel horrible about themselves. The origin of these thoughts is different for each individual, but once the person is trapped in a cycle of starvation and illness, the thoughts intensify and dominate their lives. 

It's much more logical to combat a punishing thought process with kindness and compassion rather than with nutrition facts. After one understands the facts of these illnesses, the best way to help becomes much more clear.

Recovery is not a matter education about nutrition. It's a combination of learning new ways to manage food in one's life in an environment of kindness and compassion.