Since the majority of eating disorders start during adolescence, the illnesses interfere with emotional and psychological development. Just at a time when children begin to learn about their own identity and how to interact with others in a more mature way, those first diagnosed with eating disorders start out their lives devoting energy to treatment.
The time spent in therapy learning about themselves and their emotions actually may land them ahead of the curve of this part of becoming an adult, even if the path is an unusual one. But that’s only the case for the lucky ones who recover quickly.
Others who remain sick and take longer to get well can spend many of their formative years in programs that can help them try to get well but also encourage regression in a setting aimed at recovery and not the personal growth that is the hallmark of adolescence.
The process of treatment over time can inhibit some people from feeling empowered to face the realities of becoming an adult. So much of this time of life is about finding courage to face new, challenging experiences and learning how to manage all different outcomes. For people with eating disorders, the treatment world often becomes too comfortable and transforms into a convenient way to avoid life.
Although treatment needs to provide an environment that is safe and promotes recovery, it also needs to encourage people to engage in their lives and to challenge them to participate in the world. Too often, clinicians recommend opting out of school or work for extended periods of time when there is no evidence that doing so necessarily leads to more complete recovery. For adolescents and young adults, the new world of treatment can quickly become the world they choose and find comfortable. Although treatment is often necessary, decisions about long term help need to take into account the goal of fully reintegrating into that stage of life.
The goal of treatment is not just to quell the eating disorder symptoms and return to full health. The idea is to get right back on life’s path and find a full life again.
The role of mental health treatment in the world of people with eating disorders is complex. For those who clearly are seeking wellness and recovery, traditional therapy is the best alternative. Mental health practitioners act as a source of support and treatment to help that person create a path out of the eating disorder.
What about the people not looking for recovery who still want support? Even more critically, what about the people completely outside the treatment world not interested in the professional help available?
The standard approach for many clinicians is to label these people as either in denial or intractable. The implication is that they cannot be helped and need to find their own motivation first. It’s even acceptable for clinicians to end treatment because the person supposedly isn’t ready.
This categorical approach to the idea of treatment seems very punitive to me. Why should people be rejected, judged or criticized for doing their best with a very difficult illness? Shouldn’t their plight elicit compassion and not judgment?
Another complaint patients often have is that clinicians feel entitled to tell patients how well they ought to be. Although recovery is an option for people sick with eating disorders, and for many the goal, clinicians have to accept that many people remain in their eating disorder and need someone to meet them where they are. That’s not easy for clinicians to do, but it establishes necessary respect if therapy can have any benefit.
The increased power of residential treatment companies also encourage the mindset that wellness is the only option and that residential treatment is the only path. It threatens to limit to full scope of treatment options and label everyone else as unmotivated.
Clinicians who treat people with eating disorders need to be cognizant of the limitations of eating disorder treatments and to be open to all forms of treatment and life paths. Flexibility, humility and openmindedness make the best clinicians to help people struggling with eating disorders.
When someone, clinician or layperson, begins to understand the underlying thought process of anorexia, it becomes hard not to see the illness as a fundamental problem in brain function. The medical consequences of starvation make clear that anorexia is a physical illness as well, but the tortured thoughts of the disorder are the most shocking revelation.
The overall treatment plan for anorexia is a treatment team covering all the possible bases: therapist, psychiatrist, dietitian and primary care doctor. Sometimes, attention to the details of recovery and improved nutrition are enough to start reversing the course. Frequently, they are insufficient.
Consequently, it’s reasonable that patients and families turn to psychiatric medication as a possible salve for the psychological wounds inflicted by anorexia. There must surely be a medication that can reverse the nonsensical and distorted view that food is not meant to be eaten and that weight loss is paramount no matter the cost.
The psychiatric community agrees with this assumption. Despite the utter lack of success of any medication and the ignorance of an underlying biological cause of the illness, psychiatrists continue to study any medication for its utility in the treatment of anorexia. Even though all studies have thus far have been futile, desperation for more effective treatment is the driving force for continued clinical research.
As of now, the most salient fact about the cause of anorexia is that genetics account for over 70% of the likelihood that someone develops the illness. There needs to be an initial trigger of starvation in order to assess how someone is programmed to respond to a lack of food.
In our society currently, sanctioned dieting, even for children, allows many communities to serve as breeding grounds for eating disorders. The mere acceptance of dieting as a reasonable decision puts adolescents and adults at risk regularly. Prior to the practically universal acceptance of dieting, eating disorders barely existed in our communities.
Survival is the body’s primary ingrained response to starvation and surely is an adaptation that enabled ancestors not lucky enough to live with an overabundance supply of food to persist. It’s unlikely that there is a pharmaceutical fix for a longstanding genetic adaptation.
Although the crucial step to decrease anorexia and eating disorders is to stop sanctioned dieting, it’s more likely that we can create an environment that helps someone already sick to constantly question the anorexic thoughts. When a trusted clinician combined with the person’s support network repeat that the eating disorder thoughts are lies and only hurt them day after day, week after week, month after month, recovery can be possible. Yes we need more options, but medications aren’t likely to be the solution.
One topic i have not addressed more clearly is the person who has no true interest or ability to consider full recovery. The idea that people with eating disorders are sick forever is a common misunderstanding in today’s culture. In fact, it is still surprising for many lay people to hear that recovery is even an option, let alone something that occurs on a regular basis, albeit over a period of time and with very difficult, often excruciating work.
Realistically, many people do live with eating disorders for their entire lives. Many of them get professional help, but with the purpose of seeking emotional support from a knowledgeable clinician and perhaps guidance how to manage the illness and still function in life, not to get well.
The distinction between treatment intended for recovery and management of an eating disorder is significant. As opposed to full treatment, eating disorder management has very different goals: containment of medical conditions associated with the illness, emotional support for the daily struggle of surviving an eating disorder and education about improvements in eating that will manage weight and health within the guidelines allowed by the eating disorder.
Many clinicians refuse to work with people who will not commit fully to recovery. So most of these patients have been ostracized and left to feel alone in their predicament. It’s a mandate for the clinical eating disorder community to commit to helping these people. They shouldn’t be punished because of our lack of effective treatment for the sickest people.
More than anything, people with chronic, intractable eating disorders need compassion. They did not ask for this horrible illness. Many of them have endured long stretches of available treatment with minimal benefit. They deserve kindness and thoughtful care to help them live the best lives available to them. It’s hard to completely ignore my optimistic thought that even in these circumstances, at least partial recovery, if not more, may still be possible. The next post will discuss treatment of these patients more specifically.
The standard of care for an eating disorder, if someone doesn’t need residential or hospital care, is to assemble a treatment team. This involves several components: a therapist, a dietitian, a primary care doctor, a psychiatrist (frequently but not always) and a set of other possible options such as meal support or group therapy.
This team covers all the bases and provides treatment for all different aspects of recovery. It’s almost dogma for clinicians to automatically suggest assembling a team and for many people doing so leads to progress.
However, there is a reflexive element to this process; as if the team itself somehow creates an illusion that recovery and wellness is easily within the grasp of all patients. The reality of eating disorder treatment consistently shows that not everyone gets well quickly and not everyone gets well.
This advice also serves another purpose: to insulate practitioners from responsibility if treatment doesn’t go as planned. Since the team approach is the standard of care for people with eating disorders, it’s easy for treatment providers to tell themselves they did their part. They were part of the team or recommended assembling a team. If the team didn’t help, tacitly blaming the patient is an easy option to fall back on.
For people early in their treatment, working with a team makes sense. Exposure to all types of eating disorder clinicians will help someone find what works best for them.
After this introductory period, individualized treatment is crucial. Continuing to suggest the exact same thing for someone who already has tried that path with limited benefit deserves more thoughtful care.
It is the responsibility of the clinician to think outside the box for different ideas to help. Relying solely on the standard care only shows a lack of creativity and frankly a lack of caring. Since eating disorder treatment is far from perfect, patients need to know all possible elements of treatment are on the table and that the people in their corner are doing everything they can to make a difference.
It’s a fine line between blame and responsibility when it comes to eating disorder recovery. I wrote the last post with trepidation that it was too easy to interpret my words as blaming the patient for their illness, something I adamantly oppose.
And certainly the same logic wouldn’t apply to a purely physical illness such as cancer.
Part of the difference lies in the core medical knowledge and treatment options. The science of brain function remains in its infancy. Only a few decades ago, a common misconception was that people only use 10% of their brain, but that factoid reflected justification for our collective ignorance. Even as we learn more about how our mind works, the yawning scientific gaps preclude the large majority of any truly functional knowledge.
However, the medical information available about cancer is also very limited, as is treatment. Why is the discrepancy in attitude towards eating disorders as opposed to cancer so wide?
Cancer is an invasive “other” in one’s body. The psychological component of treatment is one of endurance and maintaining optimism in the face of so much fear and doubt. The goal of treatment is very clear. There is no way for the doctor-patient relationship to be adversarial.
Eating disorder treatment attempts to separate out the eating disorder thought process from one’s own independent thoughts. Although that construct is useful and effective, it is a construct nonetheless. Eating disorder thoughts may be the driver of the illness, but they still feel like one’s own thoughts. The cognitive exercise of learning to identify them as part of the illness, dismiss them and follow a different, often newly acquired set of thoughts is challenging at best.
When an educated, caring, well-meaning clinician urges week after week the patient to follow these new thoughts and ignore a well-worn pattern of daily life, inevitably there will be friction in the treatment. The process of learning new patterns with food and managing the concomitant thoughts is challenging and bumpy. Since no treatment can effectively ease this painful transition, that responsibility to work on new behaviors each day has to lie with the sufferer.
This is certainly a cruel joke. Not only is someone saddled with an eating disorder but the only effective treatment option is a slow and painful struggle against the powerful eating disorder forces. And it’s easy to see why not everyone can get well.
I am always searching for new ways to make this easier, to prevent the suffering and to sidestep the prolonged pain of the process. I remain hopeful because many, many people do get well. In the meanwhile, I also have to accept these realities and communicate them in treatment.
One tenet of early treatment for an eating disorder is that it is not the person’s fault for getting sick. Falling into an eating disorder is terrifying, and realizing how trapped one is even more so. As hard as it can be to see that not eating normally is an illness, it’s crucial in order to start the road to recovery.
Education about eating disorders and treatment involves a lot of education. Someone must understand how the thought process of an eating disorder works in order to learn how to circumvent it. This involves difficult components such as identifying one’s own thoughts as eating disorder thoughts or challenging the idea that hunger and fullness may not be an accurate assessment of the body’s needs. Making changes involves questioning daily experiences most people can take for granted and trust.
However, some people, even after having significant treatment and education about their illness, still struggle to get well. Although all people can recover, everyone doesn’t recover, even those who have seemingly taken all the appropriate steps.
There comes a point when someone needs to find a way to implement everything they have learned about recovery into their daily lives. This means following a meal plan, accepting accountability for their daily choices, tolerating the enormous emotional and psychological discomfort of those decisions and committing to difficult changes for the long haul until they see the rewards for their actions.
Clearly this is a difficult road.
For people who struggle to make changes for years, it’s easy to see how the initial phase of not blaming the patient may turn falsely back to blame. Again they are not responsible for having gotten sick. That always remains true. However, after receiving the available treatment, any further changes has to come from the person struggling. No one can feed them. No one can walk in their shoes. No one else can endure that pain and suffering.
At that point the person needs to bear responsibility for the steps they need to take for recovery. It’s not about blame and it certainly isn’t fair. It only highlights the limitations of eating disorder treatment.
Although there is so much more help than there was twenty years ago, the reality is that the final steps to get well still lie squarely on the shoulders of the person suffering. I wish wholeheartedly that treatment could offer more, but these realities mean that responsibility, not blame, still lie with the person who is ill.
Binge eating disorder is discussed less frequently than most eating disorders. There is a specific subtype of binge eating disorder that has even more limited exposure. It involves people who have obsessive thoughts about food all day, intense cravings for various foods and who compulsively eat all day. Many if not most days, they eat until they are in pain and can hardly move or breathe. However, they never binge in the typical sense by eating a much larger than normal meal in a short period of time. Instead they eat constantly without cease all day.
For most eating disorders there is a clear emotional connection to the eating, but in this circumstance, it is often difficult to find immediate connections between behaviors and emotional or psychological needs. Eating is almost a constant, physiological need.
In treatment or circumstances without access to food, these people can refrain from binging. With any access, the thoughts and urges are almost impossible to resist.
Unlike many eating disorders, I have wondered if this type of eating disorder may turn out to have clear biological underpinnings. We all have cravings to eat food and then are satisfied once the meal is done. These people don’t seem to have the mechanism of satiety which leads to feeling satisfied, both physically and mentally, followed by the decreased desire to continue eating. As we learn more about the gastrointestinal hormonal system, it is possible these people have an abnormality in this system which inhibits their ability to respond to satiety appropriately.
The reality of this kind of eating disorder is constant physical discomfort and often pain. Endless binging leads to chronic gastrointestinal pain and stretching out of the stomach. Sometimes people can get so full that it takes hours if not a full day to digest the food. The energy needed to digest and process this amount of food takes away from energy for the rest of life, and functioning in school or work can suffer. The effects can be debilitating.
In my experience, many of these patients try a sufficient round of therapy and treatment to no avail. Medications such as Topamax, Vyvanse and even an old medication no longer available in he United States called Meridia can be effective. When a medication helps, it is as if a light is switched off. People suddenly feel able to withstand mental cravings for food and can heed satiety cues. The result feels miraculous to them. It’s very rare for people with eating disorders to have such an immediate and potent response to medications.
These symptoms seem to function as a different kind of eating disorder. I consider the symptoms as a problem with satiety more than anything else. Recognizing this illness as a distinct entity in the eating disorder treatment community would help these people get care tailored to their specific issues.
When a family first hears that their child has been diagnosed with an eating disorder, the sense of shock quickly morphs into action. An online search leads to a dizzying array of options all presented in glossy format on newly designed websites. It feels like picking out a spa for vacation more than clinical care.
Even five years ago, the initial search for help was very different. It was a lot harder to find ways to navigate the eating disorder treatment world back then. The handful of programs were the backdrop for other types of outpatient care. Now the programs compete for eyes marketing their programs as much as they do health and recovery.
I have always told families or individuals looking for help that the most important step is to find a clinician who can organize a structure and plan for treatment. With a trusted person focusing solely on health and wellness of the person with the eating disorder, the other forces that dominate the eating disorder treatment community can’t take over.
Ultimately, the course of care needs to be individualized. Even though eating disorder symptoms are fairly similar person to person, each individual needs different care after the first few months. The larger programs are designed to give standardized care for a brief amount of time, rarely more than six months. Since recovery is a longer road, there needs to be someone thinking over the full spectrum of the path to getting well.
For families or individuals, the best course is to research clinicians in their area and even to broaden the search to less convenient locations in order to find the right person. That person needs to have experience treating people with eating disorders and connections to a larger community of clinicians who do the same work. The most important factor is a sense of trust in this person’s desire to help and to care. Getting well isn’t based on the fancy new program but on finding the right person to coordinate care.
The eating disorder treatment community typically treats body image struggles as a type of disordered thought without any context. The cognitive behavioral model identifies it as a false idea that needs to be contradicted and then will be best treated through distraction techniques.
Although this form of support and guidance can be helpful, the clinical approach to body image also ignores the larger context of women’s body image in our society and the physical self as a means of societally condoned self-loathing.
I am certainly no expert in women’s studies or the objectification of women, but the rise of eating disorders starting in the late 60’s also coincided with the media saturation of images of women that instigated a deep sense of inadequacy for women and their appearance. In fact, there is clear evidence that the introduction of western culture quickly triggers eating disorders in societies without any bias for thinness. The best example of this change is in Fiji in the late 90’s where American television created an eating disorder culture within a few years.
However, the clinical community cannot also function as a philosophical guardian for our culture. We as clinicians may be able to treat symptoms, but we cannot police a culture gone awry that has, through powerful, pervasive messages touting body inadequacy, disempowered women at a time when their power and strength has finally risen.
Where should clinicians then draw the line about accepting eating disorders as a reality in our world? Should part of eating disorder advocacy also involve recognizing the need for a fundamental shift in how we view women’s bodies? Is the correlation between eating disorders and addiction a way of normalizing these illnesses and not facing their societal ramifications?
As a man in a women’s universe of eating disorders, I may have some perspective but also by definition am outside this daily reality of inhabiting a woman’s body in today’s world. Yet I think it behooves the eating disorder clinical community to recognize the events that have brought up a brand new set of illnesses in recent decades. Sanctioned starvation combined with culturally acceptable self-loathing of women’s bodies have made eating disorders a new fact of modern life. These realities need to be more clearly expressed and called out by the activist organizations.
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