What the Journey of Eating Disorder Recovery Actually Looks Like

Sometimes eating disorder recovery looks like a straightforward, if not simple, path. Work on eating a meal plan, restore health and weight and then waltz off into a well body and healthy life.

Anyone who promises this plan and utopian endpoint is not telling the truth.

Eating disorder treatment is a journey that is deeply introspective with unexpected twists and moments of fear and hopelessness and others of inspiration and joy. In between, there are long stretches of monotony and the mundane.

Recovery looks a lot more like daily life but just more intense. The journey from the reliable prison of an eating disorder combined with the numbness and isolation of that life to the immediate connection to and experiencing of the real world is a lot to handle at first. Being so much more exposed to outside reality and the internal experience of more emotion can be overwhelming, especially since eating and body changes accompany these steps.

Over time, it becomes clear that treatment is a much longer path. It’s necessary to have a companion, aka a therapist, who is knowledgeable, patient and kind. It’s important to try to surround oneself with at least a few other people who care. It’s essential to learn to have compassion and kindness for oneself.

There will be many bumps in the road. The negative thoughts about oneself stay present for quite some time. Moreover, finding things that matter serves a necessary function to show that there is more to life than an eating disorder.

The path is long, usually years long, but it is not a march to an endpoint. It’s a journey that steers life in a new direction, opens up ways to see oneself and the world that were unthinkable before and makes life so different than it might have ever been.

The journey is in fact the point, not recovery itself. The eating disorder was a byproduct of the effects of life and a stopgap measure for survival. Getting well means finding a way to live that matches the true person underneath and her desire to live in the way she wants to live. Recovery is not only playing the long game. It is focusing on one’s life and not just getting by.

What is Eating Disorder Recovery Really About?

Eating disorder treatment is almost exclusively focused on meal plans and weight in recent years. The end goal of recovery is settling at the correct weight, and any obstacles in that path are signs of a recalcitrant patient unable to get well.

This formulation of eating disorder recovery is a complete misconception of what an eating disorder is and how people get better.

The first step in treatment does need to be restoration of regular eating and maintaining a baseline of health. Weight is one data point in that process but far from the only one or the most important one.

Regulation of food intake and overall health are treated as the central part of recovery. Since eating disorders are the only psychiatric illness with immediate medical consequences, a risk-averse mental health practitioner might feel overwhelmed by taking on this medical liability. I agree that stability is important but not as a way to sacrifice crucial psychological parts of getting well. The limitations of mental health clinicians can’t change what’s necessary for successful treatment, not if we really care what happens to the people we try to help.

Once enough stability is established, the true work of recovery begins. As hard as it can be to stabilize food, the psychological work is always harder.

Eating disorder symptoms have many powerful effects on daily life: clear structure to the day, unquestioned feedback of success or failure, immediate numbing of emotions and complete reliability at any given moment. In a world where none of these four is a guaranteed part of life, it’s very difficult to give up such absolutes for the vagaries and uncertainty of life otherwise.

Typically, the eating disorder symptoms start at a young age. Thus, people grow up with the four cornerstone benefits of an eating disorder and organize their lives and their identity around these core beliefs.

Recovery isn’t just about eating regularly. It’s about creating an entirely new sense of self and way to cope with daily life.

No wonder recovery must take on an existential quality. No wonder the therapy relationship must be so central to this transformation. No wonder eating is not just about food but about reengineering a new identity.

At the heart of this post is the concept of what eating disorder recovery looks like. The current state of the treatment field mistakenly says that eating and weight are the mainstays of getting well. The truth is that stabilization of food and weight is only the first part.

Recovery is truly learning about oneself, building a new way to function every day and exploring and building one’s own identity separate from the eating disorder. It’s a tall order, but this process provides the ability to live a full life.

Eating Disorder Clinicians Guide: Listen to your Patients

In the early days of eating disorder treatment, the days when psychoanalysis and intensive psychotherapy still predominated mental health treatment, clinicians realized that eating disorders stemmed from a feeling of not being heard. The essence of any successful treatment started with listening to the patient. The eating disorder represented a nonverbal expression of some deeper feelings and fears that nobody would stop and pay attention.

Despite the explosion of cases in recent decades, the widespread dissemination of idealizing thinness, the takeover of treatment by private equity and the newest onslaught of GLP-1 medications to eradicate any fat in the world, the essential truth about eating disorder treatment has not changed.

Providers cling to measuring weight as a sign of health in eating disorders, reflexively recommend HLOC (higher level of care) despite the evidence that these programs seem to harm the majority of their patients and use the trope of the “eating disorder voice” to promulgate blame as the most powerful tool to cow and silence people with eating disorders.

None of these interventions involve listening.

There doesn’t seem to be much teaching or guidance for clinicians anymore to listen to their patients. People with eating disorders are still people with viable and important thoughts and feelings, values about the world and beliefs about what is more or less likely to help them. Given the limited options for care, patients often give up and understand there aren’t many places to seek help. Even a small window of hope that someone will listen in treatment inspires a desire to get well very quickly.

Eating disorders can come with many concomitant issues: traumatic events, medical issues as discussed here in recent posts or terrifying social pressures. These similarities don’t eliminate the differing needs between individuals. Each person wants to be heard in order to find a path towards getting well.

Expansion of care has been a boon for people with eating disorders. Not long ago, the lack of access to care was the biggest issue in treatment. Much of this expansion came with financial firms investing in programs for a profit, not for quality of care. The treatment philosophy can be just as cost effective if clinicians don’t follow an exact protocol but instead follow the patient, listen and help that person find a way to pursue their own goals and the life they want to live.

Granted, any treatment still needs to involve working on food plans and enabling the patient to get to a healthy place in their life. Physical health can accompany mental health when personal goals and desires are just as important as the number on the scale. Listening to people is the only way clinicians truly make a difference.

Treatment for Purging and Chew-Spitting

Purging is a common eating disorder symptom often overlooked as a pernicious and insidious behavior. Too often treatment providers are very critical of purging without understanding the true reason why some people feel a strong urge to do so. Along with chew-spitting (chewing and spitting out food), these two compulsions often linger and resurface throughout the process of getting better.

Purging and chew-spitting both typically start as an attempt to manage fear of eating what feels like too much food, whether or not it is a binge. They rarely begin as intentional but rather as a way to undo eating that feels too overwhelming and terrifying to tolerate.

Binging can be involved in the process but often is not. The compulsive behaviors become the focus of many people’s eating disorder over time and can be difficult to stop.

These two behaviors have a very powerful and immediate emotional impact. They change the person’s mood and decrease anxiety almost immediately. Not only is the food eaten part of what feels overwhelming, but the intensity of the feelings preceding the action also feels too strong to bear and is wiped away almost immediately by purging or chew-spitting.

People who find purging or chew-spitting a powerfully calming tool incorporate these behaviors as a coping strategy at a young age. Over time, both can become a seamless part of daily life. Purging is very easy for many people and involves little effort. Chew-spitting becomes something people can do, even in public, without anyone noticing.

Also because these behaviors start at a young age, they don’t find other ways to tolerate or cope with the discomfort of intense emotion. Instead, they use these actions to manage their emotional state and go forward in their lives.

One big problem is there is no incentive or desire to learn other ways to live, and these eating disorder behaviors result in larger problems over time: incompatibility with relationships, limited psychological and emotional development and intense shame and guilt.

By the time someone is ready to try to stop the behaviors, they are very ingrained and almost automatic.

The treatment for these compulsive behaviors starts with cognitive behavioral therapy, namely food logs to identify triggers for purging or chew-spitting. Following the first steps, the core work focuses on learning new ways to identify emotions, process that awareness and learn how to tolerate the internal discomfort of having these feelings.

Sometimes the treatment is straightforward if the person can identify and manage the emotions more easily. For others, the compulsions are so woven into daily life that taking away the behaviors feels like ripping away the emotional fabric of their entire lives.

In addition, trying to separate shame from the behaviors is central to the treatment. Shame almost always reinforces the actions, but these are compulsions that often feel addictive and not within a person’s immediate control. Compassion for oneself makes a big difference in learning to be patient while making changes.

Purging and chew-spitting need attention in eating disorder treatment and have clear paths toward getting well. The therapy must reinforce the concept of the behaviors as compulsions to learn about and work on with compassion. That openness will allow for an understanding conversation over time and lead the way to get better.

A Meaningful Therapeutic Relationship is the First Step Towards Recovery

Recent posts address new parts of eating disorder treatment that are on the forefront of how to recover in today’s climate: the cultural and personal effect of the GLP-1’s and the overarching changes due to private equity investment in residential programs. As critical as those topics are, nothing changes the central pillar of treatment: the strength of primary therapeutic relationships.

Starting with the dawn of modern treatment for eating disorders in the 1970’s and early 1980’s, therapists versed in care for people with eating disorders knew that recovery needed an open, trusting, profound relationship in order to start the process of really getting well.

Eating disorders in almost every iteration cause severe isolation, reliance on a set of thoughts and behaviors that are powerful but all encompassing and a litany of shame, guilt and blame from all corners of modern society. A disorder people almost always fall into at a young age creates a prison from which there appears to be no escape.

A primary relationship opens a window out of the prison and, over time, invites the person stuck in the eating disorder to try stepping outside the cell to see what life might be like otherwise.

In the daylight, life is not sunshine and rainbows. Moving away from an eating disorder allows for opportunities to grow, learn and change many elements of life, but those changes can be painful and hard at times even if sometimes the results can be uplifting or exhilarating too.

The promise of a wonderful life at the end of recovery is not even close to the truth. The possibility for fulfillment and finding meaning is within one’s grasp without the eating disorder keeping that person in prison.

The primary therapeutic relationship allows for open conversation, time to explore emotions and thoughts and the option for true growth into a person no longer mired in disordered thoughts and behaviors and instead able to engage with the world.

The treatment world is increasingly filled with residential programs run like a mill, online treatment by anonymous clinicians and virtual work which allows both sides to hide behind a screen. As much as the increased access to care is necessary, the focus of treatment must remain on the clinical relationship. Trust and care are the bedrock of meaningful recovery. Openness and honesty allow for the personal growth needed to move away from complete reliance on an eating disorder.

I will continue to address the ways eating disorders and the treatment field change since these factors affect the process of recovery greatly. However, the fundamentals of treatment remain unchanged. A meaningful primary therapeutic relationship will always be the necessary foundation to get well.

Body Image Work in Eating Disorder Treatment

Body image thoughts are almost always the hardest part of any eating disorder recovery. Although not everyone has these thoughts and may have other difficult parts of recovery, body image tends to be a big challenge to address.

First, body image is subjective. Even if clinicians can counter body image norms in many different ways, these data points aren’t very convincing. Besides, we process our own body image very differently from other bodies. There is some compelling research to show that processing one’s own body image uses non-visual brain centers. So body image is likely more about self-perception than it is about what we see in the mirror. It’s hard to convince someone to see themselves differently when they aren’t even seeing themselves at all.

Second, body image and weight are markers for people to assess their success or failure. Each morning on the scale or each day trying on an outfit is a referendum. Is today a good day or bad day? Can I feel good today or need I feel awful? Too many people with eating disorders conflate appearance with well-being in a very automatic, unconscious way. Taking away this assessment would leave them with no way to function that day.

Third, body image is everywhere. We are bombarded with media and photos of people all day long. When body positivity was prevalent, at least some of those bodies were not extremely thin. In the GLP-1 era, bodies are all extremely thin again in media and even in shrinking celebrities, family or friends. It’s hard to address body image when the world presents a very different message.

Work on body image takes a circuitous route. The focus in recovery must be more profound from the start and center on what matters in life, whether that is work, family, friends or community. People in recovery need to look inward and find a path that matters to them which, to start out, is at least as important as body image.

At first this new path may only compete with body image rights for attention. Through the process of getting well, a new focus can begin to replace and hopefully supersede the all consuming body image thoughts.

In the end, the body image concerns can still exist and insert itself into one’s consciousness. There is a big difference between intermittent body thoughts and an all consuming focus. Life needs to mean more than distorted and disturbing body image thoughts and be about other things that matter a whole lot more.

Eating Disorder Treatment Reimagined: Proper Diagnosis and Treatment of All Associated Illnesses

Eating disorders primarily are seen as psychiatric disorders in the medical system. Even though much of the treatment focuses on stabilization of food and health, which are necessary components of treatment, the success of long-term treatment rests in the hands of mental health clinicians.

There are a number of factors which led to this clinical decision: the lack of knowledge about the biological causes of eating disorders, the social construct and expectations around food and weight and the cultural dynamic of thinness which handcuffs women.

Reservoirs of health insurance money engendered a recent takeover of the eating disorder treatment field by private equity companies. Accordingly, the system is even more organized around ineffective mental health treatment and less about healing and getting well. Any progress integrating medical and mental health treatment is not a priority at the moment.

Years of experience treating people, primarily women, with eating disorders revealed to me that there are a host of misunderstood, complex illnesses for many people with chronic eating disorders.

The cohort of patients who typically fall into eating disorder symptoms without much volition and stay very sick often don’t benefit from current eating disorder treatment. It may very well be that these people are treated for a psychiatric disorder when the primary issue also includes an underlying medical problem that is not addressed.

In recent posts, I have written about EDS, MCAS and other disorders that appear to be linked with eating disorders. These illnesses are some of the medical struggles people with eating disorders face without any diagnosis or treatment from doctors. People with chronic eating disorders also can have hormonal disorders, swallowing disorders, neurological disorders and many other issues. Rarely are the medical issues treated. Instead, doctors blame all physical symptoms on the eating disorder, and thus on the patient, for not getting better.

What needs to be considered for people with chronic eating disorders is to include medical screening in a comprehensive treatment plan for these patients.

Outpatient treatment with therapy and nutrition counseling is critical for recovery. Food stabilization and therapeutic work around learning how to live without the eating disorder remain essential to get well.

However, too many people stay sick, and providers tend to give up in one way or another so these patients only blame themselves for their illness and become hopeless. These outcomes are inexcusable.

Doctors need to be more involved in all elements of eating disorder treatment for these patients to get well, and the field needs to consider all other medical illnesses and incorporate a wider net of diagnosis and treatment to help more people truly get well.

New Directions for the Medical Treatment of Eating Disorders

There is a sweeping change coming to eating disorder treatment in the near future. The connection between the onset and severity of eating disorders and an assortment of vaguely defined illnesses is likely to play a role in early diagnosis and care for people with eating disorders, especially anorexia. If there is enough interest in the medical field, these new changes may profoundly change the scope of eating disorder treatment from purely psychological to a combination of medical and psychological conditions.

Some patients with eating disorders respond quickly to standard eating disorder treatment. Many of these patients seek treatment early, more often exhibit binging and purging symptoms and have thoughts mostly focused on weight before seeking any treatment. Regulation of meals, education about diet culture and prioritization of health and well being, all central to standard treatment, can right the course fairly quickly.

These patients are a substantial population of the people getting help for an eating disorder, but they are not even the majority.

A large percentage of people have intractable symptoms not focused on food and weight which are the core factors in their eating disorder. In addition, they often develop symptoms for a multitude of other reasons unrelated to diet culture and have unexplained and often ignored medical symptoms that are deemed unrelated.

As I have written about in this blog recently, a host of other medical illnesses appear to have some connection to eating disorders, especially anorexia. The most common ones are Ehlers Danlos syndrome, mast cell activation syndrome and general inflammatory/autoimmune symptoms. The first is a genetic variant which leads to looser connective tissue, the second a varied illness with multi-organ effects and the third consists of chronic pain and discomfort. They are minimally researched, and the medical establishment shows little interest.

A final common diagnosis connected with the above is hypersensitivity, a vague title meant to indicate acute sensitivity to sensory input and emotional input. The symptoms of this condition play a role in the extreme difficulty and pain some people experience upon eating, but there is even less information about this condition.

These four together don’t generate much interest from the medical community yet impair the lives of so many women and are strongly linked to eating disorders.

Many medication treatments are now options for people with these symptoms: low dose naltrexone (an anti-inflammatory), many mast cell medications such as Cromolyn, cetrizine and famotidine and even very low dose GLP-1’s being studied for severe anorexia.

The progress in diagnosis and treatment thus far is nonexistent, but some providers have begun to look for new ways to approach chronic eating disorders.

I hope we clinicians look back at the blame I wrote about in the last few posts as a sign of ignorance and instead begin to show interest in some of the underlying medical issues related to eating disorders. Current eating disorder treatment guidelines help some people, but we need better options for a large number of people seeking help.

The Antidote to the Three False Beliefs of Eating Disorder Treatment

The three false tenets of eating disorder treatment—blame, “full recovery” and ultimatums—are an unfortunate byproduct of poor clinical decision making that causes more harm than good. The three falsehoods often become foundational beliefs for people with eating disorders and cause significant psychological harm to patients seeking help. As a result, patients need therapy to recognize the beliefs as false and reverse the detrimental effects on their own recovery.

First and foremost, no one ought to blame themselves for an eating disorder. Many factors lead to the start of an eating disorder, and they all have one thing in common: no one chooses to get sick. People surreptitiously fall into disordered behavior like restricting, overexercising, binging or purging and find that the physical and emotional effects of these actions are very powerful. These behaviors may lead to an emotional release, physiological improvement in symptoms or even relief from the effects of an undiagnosed medical issue. Every single person in treatment needs to know the eating disorder is not their fault.

Second, everyone’s path to get well is individualized. I often lay out broad strokes of what recovery looks like when I first meet patients, but those are only general suggestions of the paths people take. There is no right way to get better with one correct end result. Life in recovery still has the ups and downs of anyone’s life but is no longer dominated by the torturous thoughts and behaviors of an eating disorder. The idea of a “full recovery” only places more blame and shame on the person already struggling and doesn’t reflect the reality of getting better.

Last, there is no place for threats in recovery. If clinicians are unsure how to help a patient, it’s the responsibility of the provider to look for help, not to place that onus on the patient for not getting better fast enough.

The through line of these three erroneous beliefs about eating disorder treatment uncovers the consistent message of blame on the patient for having an eating disorder and for not getting better. Treatment focused on blame insists that there is only one way to get better. Either the plan works for you or it’s your fault.

Healing from misguided treatment necessitates a clear message: blame and shame don’t belong in any eating disorder treatment setting. The antidote to this approach of poor care is treatment grounded in compassion, kindness and sincerity.

At the heart of an eating disorder is the internal critical voice telling someone how they are a horrible, despicable person. The message from providers needs to reinforce the opposite so the person knows they are good and instead are sick and need help in order to get well.

It’s not a lot to ask of any provider, yet it’s often hard to find kindness when seeking help for an eating disorder. This clear approach to eating disorder treatment and to the person struggling can go a long way to help people get well.

Ultimatums Don’t Work in Eating Disorder Treatment

Eating disorders are considered difficult to treat. Several factors such as our collective obsession with food and weight, the entrenched nature of eating behavior, disordered or not, the strong connection between eating disorders and identity and the underlying medical issues all create a tangled web once treatment starts that many people call difficult.

As a result, ultimatums either to eat more or go to residential treatment have long been a staple in eating disorder treatment. The premise is that a patient needs a concrete goal to attain with clear consequences, if not punishment, if they fail. Ultimatums end with either the treatment team summarily dropping the patient or the patient complying. Some people see compliance as a good outcome to stabilize nutrition and health but at the expense of autonomy and psychological growth needed to get better from an eating disorder.

Clinicians benefit greatly from ultimatums. They feel as if they are standing up for what is best for the patient and simultaneously holding their ground for the right next step. Clinicians can escape a situation they’re not sure they can handle in a way that is completely accepted in the treatment community. They feel absolved of any responsibility and can fully hold the patient accountable for their decisions.

In my estimation, clinicians benefit greatly from ultimatums. After trying as hard as they believe they can, treatment providers have an easy escape hatch in order to end the therapy unscathed and feel little remorse for the outcome.

Ultimatums give little solace or hope to the people seeking help. There are three clear ways patients suffer when ultimatums are a part of the protocol.

Patients understand that the ultimatum implies that the lack of progress is their own fault due to not trying hard enough. The clear message is that an eating disorder is not an illness but a choice, and true recovery demands the patient just try harder.

Second, patients realize they can’t trust their providers. If the team were on their side, patients would be able to be honest about the strong pull towards eating disorder thoughts and symptoms and how and why it is incredibly difficult to get better. It’s harder to trust a team willing to use the information patients share as part of a threat to stop treatment.

Last, patients learn through an ultimatum that they are truly on their own. More than food or weight, eating disorders provide a failsafe, reliable source of comfort and support. The emotional benefit of the eating disorder thoughts and behaviors provide comfort in ways people can’t. Recovery means learning how to find imperfect comfort elsewhere and understanding how and why relying on people creates a much more fulfilling life. Ultimatums make it clear that providers can’t even provide support so how can anyone else help.

When clinicians feel the urge to use an ultimatum, they need to look inward as to why they are feeling so hopeless and powerless to help the person with an eating disorder. The multitude of layers to an eating disorder are incredibly complex. Any therapy deeply involved in treating someone with an eating disorder will become difficult and even frightening to a provider.

Clinicians can look for outside help, seek second opinions or consultations, dive deeper into the complexity or find medical help to ensure the patient is stable while treatment progresses. Looking to an ultimatum to solve this personal dilemma always prioritizes the provider’s concerns over the patient’s needs.