The Personal Transformation Necessary for Eating Disorder Recovery

The EDIC (see previous post) reinforces a general falsehood about eating disorder treatment that recovery stems from a stable weight and a meal plan. Adequate nutrition and stabilizing eating disorder behaviors are necessary to get well but aren’t the crux of how people actually recover.

When profit-making financial firms look to outcomes for guidance, they rely on insurance-driven metrics, like weight, and not on what actually leads to real change.

The purpose of various eating disorder programs remains short-term stability for people unable to make necessary changes as an outpatient. Any expectation for a more complete recovery from a program is misguided. The one fits all approach of residential treatment is a blunt instrument that at best helps some people leave the program better off medically then when they entered and, hopefully, ready to engage with a treatment team.

Real recovery starts after a moderate amount of behavior change. Some relief from the eating disorder usually brings back the person’s thoughts and feelings underneath, all of which has been wrapped and sealed in a fog of the eating disorder. If the person can avoid slipping right back into the eating disorder as a coping tool, then the result is the start of a personal, individualized journey of recovery.

Reckoning with all of the thoughts and feelings subsumed by the eating disorder is extremely challenging. Sometimes, there is trauma underneath and for some it may be the social and emotional growth that halted when the eating disorder took over. And there are many, many other experiences that comprise recovery.

No matter what, the personal growth, extreme vulnerability and series of revelations all stem from the gradual release of the eating disorder and the experiences that ensue after freeing the thoughts, feelings and humanity underneath the person in recovery.

In my experience, no one truly gets better without this process of personal growth. The behaviors can subside, but without returning to the individual development that stopped because of the eating disorder, the effect of the illness lingers in various ways. I suspect that even if faster and more directed ways to recover emerge in the future, the personal element of recovery will remain necessary.

What this means is that everyone in recovery needs a way to feel capable of engaging with the intense emotional growth this process demands. The changes can happen in therapy, in personal relationships, in groups, with friends and in many ways which involve engaging in life. Recovery can’t happen in a bubble or in isolation.

By connecting in the world, each person finds out what they value and thereby their sense of self. Engaging with people again leads to the transformation necessary to make a true recovery.

The Endless Battle Against Thinness

Many patients talk about eating disorder recovery in the face of our current cultural moment of extreme thinness and are confused.

GLP-1’s, and their descendants hitting the market now and in the next few years, have upended the understanding of acceptable weight loss and thinness. Access to these medications is easy as any over the counter drug, and the price is down to as low as $100 per month. Accordingly, the juxtaposition of eating disorder recovery and weight gain with the idealization of people who lose a vast amount of weight on GLP’s is jarring.

How can these two opposing beliefs be praised at once?

The drive for thinness remains one life achievement which elicits praise and envy from those around us. For many people, nothing feels better than a comment about weight loss from coworkers, friends or family.

In fact, weight loss is still considered a goal worthy of any cost. Concerns about people dosing their own GLP-1, losing weight dangerously or medical effects like passing out or breaking bones are easily outweighed by the panacea of weight loss.

If eating disorder recovery matters in our society, then acceptance and love for people irrespective of their body also needs to be a goal. Recovery means accepting a body that doesn’t achieve the ultimate goal of weight loss and instead prioritizing health and other aspects of life.

When new drugs and industry pressure for profit override our collective well being, we all need to look at the personal and societal risk. Too many people and businesses profit off of our endless desire for weight loss, no matter the risk for poor health results or the increase in and worsening of eating disorders. 

My approach to help people in recovery is to remind them what truly matters. Relationships matter. Doing things with your life that are valuable matters. Love matters. Connection matters. These goals and many others give meaning to our lives in ways that thinness cannot provide. Thinness allows for superficial hope and fleeting contentment followed by the same self-reproach and negative self-thoughts about never being thin enough or looking good enough. Weight loss always ends up feeling empty.

This cycle of weight gain and loss leads to an endless internal swirl of negative feelings and withdrawal from the world. By remembering and maintaining the fortitude to push back against the messaging around thinness, recovery provides an opportunity to forge a life free of the shackles of thinness as life’s ultimate goal.

These medications make it clear that a different value system for success and happiness is far away right now, so we all need to fight back and remember what matters in life—a philosophical change that will also help people recover from eating disorders.

The Travesty of Treatment of Chronic Anorexia in the EDIC

The EDIC, a term explained in the last post, often targets one type of person with an eating disorder—a patient with restrictive Anorexia Nervosa who is very underweight—for one specific reason: they are deemed untreatable by the medical system.

These patients are known to be more difficult to treat largely because we know very little about the underlying mechanism that allows people to survive on very little food and maintain very low weights. According to modern medicine, this illness should be biologically impossible, yet many people survive for a long time.

There is no known way to treat these patients in any setting, medical, psychiatric or residential. Many of these patients cycle in and out of programs and hospitals, are blamed for their illness and shamed for not getting better. All the medical and psychological effects of ineffective or even damaging treatments compound one another and create a burden of illness and blame which buries patients in an endless series of obstacles to recover, a blanket of hopelessness caused by the medical world’s ignorance.

The EDIC sees these patients as a consistent source of revenue. When trying to get help, many patients with Anorexia spend the majority of their time, sometimes up to 2-3 years, cycling in and out of residential and outpatient treatment. After discharge from a residential program, a few months of outpatient support leads to weight loss and a recommendation to return to residential. Insurance companies have to cover expenses for someone medically ill, and the EDIC can profit from a cohort of these “repeat customers.”

When I see these patients, they are all desperate to escape the cycle in and out of programs. Each reports the feeling of hopelessness, of feeling discarded by the programs as untreatable, of losing themselves and losing any grip on their lives.

The frequent traumatic experiences in treatment make them one and all want a way out of the cycle, even considering desperate measures such as convincing a surgeon to implant a tube in their stomach for formula feeding, anything to get away from the EDIC.

The flip side of the coin is that no better option for treatment exists in the outpatient world so patients are discharged and typically relapse. Providers are frightened by the potential medical acuity and professional liability of very underweight patients. The result is that an outpatient team jumps quickly to forcing that patient back into a program in the face of any adversity, even though any experienced clinician knows that the EDIC may stabilize things temporarily but never really helps.

This cycle is the impetus for me, with many other colleagues, to search for new ways to give hope to this group of people. Whether it’s ADHD/autism, trauma therapy, MCAS or a host of other possible ways to enable recovery, a provider who wants to treat these people has to be willing to give them a chance to make outpatient progress and swallow the fear of an underweight patient.

The eating disorder field needs to work to find another way to help this population. We don’t have answers yet, but condemning them to the EDIC cycle is willful ignorance causing enormous pain to patients and underserved profit to private equity. There are clues to more successful treatment than what the EDIC has to offer, but we as providers need to be brave enough to try them.

The Eating Disorder Industrial Complex (EDIC)

There is only one way to receive any treatment for an eating disorder. Once a patient sees a new provider, they enter a strict, rigid system that provides only one avenue for care. Stick with outpatient help and get better or get thrown into the finance-driven world of one size fits all outpatient or residential programs. All providers now work around this system and assume the industry can back up any clinician by giving supposedly adequate care and saving any clinician stuck with a difficult case.

The once overlooked eating disorder field is now a boon for the finance world, what I call the Eating Disorder Industrial Complex (EDIC).

The introduction of private equity into the marketplace led to an explosion of residential and outpatient treatment centers aimed at exploiting the insurance market for profit. Programs did not further or improve treatment at all but instead doubled down on existing, largely ineffective models. By expanding access across the country, the EDIC made treatment more palatable to providers who now can opt out when the going gets too tough by saying go to a program or treatment ends.

Although widespread availability of treatment is the new norm, the EDIC provides cookie cutter care by a largely inexperienced staff. It’s no surprise that the EDIC is failing a large percentage of patients.

The current protocol is a combination of one meal plan fits all, standardized residential care and generic therapy often run by a rotating group of new clinicians. There is no real evidence this treatment plan works, and many patients end up in a revolving door of various programs until either insurance won’t pay or they give up.

Programs ignore new information about coexisting ADHD, autism or MCAS with eating disorders. Where are the programs with a different learning style for people with ADHD or that are less chaotic for people with autism? Why aren’t programs considering and treating other medical issues that make recovery harder like MCAS?

Since there is no accredited degree or certificate to treat people with eating disorders, clinicians have to learn on their own and do so in the shadow of treatment programs. When patients aren’t doing well, providers can decide not to see someone and insist they go to a “higher level of care.” The EDIC allows independent therapists and doctors to sign off on a patient who gets too sick and trust the programs will make things better. Even clinicians in private practice have no incentive to try to improve care since they can rely on the EDIC to bail them out.

What happens to the patients who cycle through programs for one, two or three years? They desperately want to get back to their lives. For some that means stopping all treatment since all roads lead to residential care. Others beg surgeons for feeding tubes in their stomach to have enough nutrition to stay out of treatment. Many just give up and turn to social media for solace and new ideas about how to get well.

Medicine and the psychology world have abandoned a desire to meaningfully help eating disorder patients to the EDIC. Financial gain has become the driving force for eating disorder care, not improved treatment and outcomes.

It’s due to this sad and frustrating situation that I and other likeminded providers are looking for answers. Part of this new line of treatment involves taking social media concepts seriously and creating outpatient teams which can treat the concurrent illnesses and psychiatric disorders that complicate eating disorder recovery.

Just as important, patients need people to believe in them. The traumatic experiences of a revolving door of treatment combined with a series of providers who give up on them, blame them for their disorder and condemn them to a life of chronic illness causes an enormous amount of pain, trauma and hopelessness. Therapy for these people is as much about undoing the trauma of endless treatment as it is about recovery.

Just the act of having a provider believe in true recovery, that people with eating disorders can get well and that there is a chance to live a full life goes a long way towards helping people truly get better. That sense of humanity and lack of judgment is sorely missing in the EDIC.

Reassessing eating disorder treatment needs to start from the ground up. Focusing on people and their healing has to be paramount, not financial gain and capitalism.

A Reminder that Eating Disorders can be a Very Serious Medical Risk

The general population knows more about eating disorders now than ever before. These illnesses can be found in modern culture through all sorts of media: television, social media, podcasts etc. As a result, the stigma around eating disorders has decreased. More people and families speak up about their struggles. The overwhelming secrecy and shame are no longer as all consuming.

Anorexia, Bulimia, binge eating and ARFID are in our daily vocabulary. The basic understanding of what these terms mean is within the grasp of a much larger swath of the population.

I can see the effects in many significant ways: people seek help earlier in the course of the illness, families are more open to learning and support, patients know so much more from the start and can dive into recovery.

Even so, these diseases are still conflated with vanity, the desire to lose weight, be as thin as possible or control one’s body due to our thinness-obsessed culture. From a more in depth point of view, more people see eating disorders as a way of coping with the emotional challenges of daily life and as a means to find accomplishment or satisfaction in the behaviors and results of the illness.

However beneficial this information is for awareness and acceptance of eating disorders, one critical complication is often overlooked: the serious medical complications.

The severity of eating disorders may not be as evident to a lot of people, but anorexia is the psychiatric illness with the highest mortality rate (along with schizophrenia). Education about eating disorders has to include a basic understanding of the severe medical and health risks too.

Although classified as psychiatric disorders, eating disorders are also medical diseases, sometimes very serious and even terminal. Anorexia can lead to damage to the cardiovascular system, organ failure, fluid retention around organs and paralysis of the gastrointestinal system. Bulimia may cause abrupt changes in electrolytes that can result in heart arrhythmias. Binging sometimes leads to a complete halt in the gastrointestinal system.

Eating disorders need medical attention, especially when the symptoms are most severe, in order to facilitate the beginning stages of recovery.

This post is not meant to be a warning but more a reminder of the medical concerns underlying eating disorders. Medical stabilization has to be a first priority before any and all steps in treatment. Let’s not forget that people can get very medically ill from these illnesses. Health has to be the first step before anything else.

What Patients with Eating Disorders are Demanding on Social Media

The last post reflects the desperation that people with eating disorders, who know the clinical field is failing them, feel day in day out. Without recourse to change treatment, patients don’t want to accept chronic illness without any chance of improvement anymore. The ability to band together, crowd source and develop new avenues for recovery, largely on social media, is new. Some patients refuse to feel condemned to a life of chronic illness and are trying to force the field to think and act more creatively.

From my vantage point of treating people with eating disorders for many years, I see the need for change. My practice represents a very small number of cases compared to the variety of eating symptoms and concomitant issues that the entire community faces, yet the need for different types of treatment is obvious. Armed even with more anecdotal data, the field can try to parse out different ways to treat not only the myriad psychiatric symptoms of eating disorders but also the medical issues that block avenues to get well.

Traditional eating disorder treatment is very reductive. The number one issue is disordered eating. The plan goes as follows: normalize eating, accept new “ideal body weight,” grapple with personal emotions issues around oneself and one’s body, deduce the “root cause,” accept personal responsibility for any setbacks and, finally, recover.

For years, this proscribed way to recover was the only way. The assumption that the many varied types of eating disorders might need only one way to get better is both absurd and a set up for failure.

The growing set of varied experiences people with eating disorders describe on social media completely debunks the current state of eating disorder treatment.

Eating symptoms themselves vary from restriction to binging to purging to laxative use to varying sensitivities to food to swallowing difficulties and the list goes on.

The overlap with neuropsychiatric illnesses including ADHD, OCD, trauma and autism lead to very different experiences and the need for different forms of recovery.

Medical illnesses often seen in people with eating disorders are a third factor in treatment. MCAS, autoimmune diseases, gastrointestinal issues that make eating more difficult and sensory difficulties mandate creative ways to get better.

Naming the various issues that impact recovery is one thing. Progress only comes from real changes to treatment.

For psychiatric illnesses, this can mean adding in medication or, even better, adjunctive therapy to treat the other concerns early on. Medical illnesses need attention right away both for early treatment and to recognize that healing the eating disorder must also address other underlying medical factors. Many people with eating disorders find that clinicians obsess about weight and ignore the concerns patients have had their entire lives.

What patients are pointing out is that treatment needs to be individualized. Providers can look for common illnesses that accompany eating disorders, listen to patients when they talk about their primary concerns and consider the need to treat of these issues at the same time as the eating disorder. The latter point especially can serve two necessary purposes: acknowledge the need to transform and individualize eating disorder care and communicate that clinicians need to listen to their patients from day one.

New Treatment Directions for Eating Disorders

The last post highlights a problem with eating disorder treatment: not listening to our patients. The field has been stuck in the same treatment paradigm for decades without much progress, yet there is little urgency to consider new ways to help patients. We still believe that eating disorders are largely volitional and emotional: getting to the root case will change behavior, medications can augment success and, when that doesn’t work, ship people off to a “higher level of care.”

Years of experience show this plan does not work for a significant number of patients. They often end up cycling in and out of treatment without much improvement, actually getting worse and more hopeless due to how ineffective treatment can be or just forgoing treatment altogether.

We as clinicians accept both a very long course of recovery and the unsubstantiated trope that eating disorders “never really go away.”

There is no codified treatment protocol for providers, no suggestions as to what kind of treatment to pursue or even what works. Trainees in various programs have limited education about eating disorders. The guidelines from professional organizations are vague and, more often, just superfluous.

Any changes in treatment in the past decade were driven by patients as a community discussing their experiences, largely on social media.

That’s the way I have learned most of the new things I have incorporated into my practice the last several years: the role of ADHD, autism, MCAS and other inflammatory disorders to name a few.

Patients bring me their concerns and explain their symptoms with the help of their online community. I gradually accumulate clinical data to use for treatment, review diagnoses I didn’t know or remember much about and begin to change course of treatment. These additions often enhance and sometimes even accelerate recovery.

Medical research cannot keep up with growing theories about illnesses, eating disorders included. Clinical fields often have their own biases about the patient population or the illnesses they treat. But these facts sideline what’s most important. Patients themselves just want to get better. And if they bring useful information to their provider, shouldn’t that person do what it takes for people to get better?

That last point may be the key. Medicine continues to change rapidly. Access to information online combined with AI offer a broad foundation of (mostly correct) data right away. Amidst these changes, maintaining a creative and thoughtful approach to diagnosis and treatment is harder than ever. Switching gears to see patients not just as someone to treat but as a collaborator in diagnosis is a challenging transition for clinicians. Yet this step is essential to improve eating disorders treatment.

ADHD is one shining example of an improvement in eating disorder care driven by patients. Others are on the precipice of having an equally powerful impact. I believe all providers in the field need to keep in mind that a static treatment plan is not the most effective one. There is a lot more we can do to help people get better, and sometimes patients themselves have some of the answers.