What the Process of Real Eating Disorder Recovery Looks Like

The era of quick fixes is not compatible with the nature of eating disorder recovery. The stages of getting better involve normalizing food patterns, stabilizing body function with consistent nutrition, undoing old coping mechanisms, learning how to handle life without behaviors and finding one’s own identity in the process.

Developing socially, emotionally and psychologically with an eating disorder leads to skipping many necessary parts of maturing by using the eating disorder as a fast, easy and effective coping tool. The results are very limiting and often disastrous.

The steps necessary to get better start with going back to the development that never happened and rebuilding oneself without using the eating disorder as the foundation for dealing with life.

Clearly, this entire process takes time and energy. The last post reflected on the existential part of recovery and highlighted how profound the inner search for self and meaning is during the period of healing.

Patience is no longer part of the modern day experience for many people. Technology continues to offer fast results with minimal effort, and the current pop-philosophy of immediate gratification capitalizes on our overall desire to fix problems and put them behind us.

The best example at the moment is the fallacy that GLP-1’s cure eating disorders by quieting food noise—a term some people erroneously use as a synonym for an eating disorder. I have written many posts in the last few years about the potential benefits and concerns using GLP-1’s for eating disorder treatment but have yet to see anyone cured by this medication.

No immediate cure is on the horizon.

Anyone embarking on the path of eating disorder recovery needs to be aware that the process is difficult and time consuming. There’s no reason for anyone to think there is an easy road ahead.

However, it also behooves anyone who is getting well to know that both the journey of self-exploration and the results of personal knowledge, identity and meaning can lead to a more fulfilling life.

Why Are Existential Questions a Focal Point of Eating Disorder Recovery

The last post explains some of the systemic and societal causes for the continued high number of people with eating disorders. This post will address how the larger issues in our culture affect the course of eating disorder recovery.

Although these illnesses are mental disorders which lead to obsessive thoughts about food and weight combined with disordered patterns of eating, the underlying causes of eating disorders are typically one of four things: social pressures for thinness, a reaction to trauma, a manifestation of medical illness or the search for meaning in life.

The last cause is almost always present even when one of the first three on the list exist as well.

Rarely does an illness represent the almost universal mental struggle of a culture. Existential angst is the lifeblood of modern anxiety and pervasive for people with eating disorders. Any successful eating disorder recovery thus encompasses a significant existential component. Therapy returns again and again to the meaning one finds in daily life, the root of what makes life valuable and the importance of connection, relationships and love.

Recovery without a period of time focused on the meaning of life and relationships rarely holds.

Treatment of mental illness has a typical protocol. The first step is an assessment of emotional and psychological symptoms followed by diagnosis. The second step is a plan for treatment with medications and specific types of therapy. The ongoing treatment afterwards centers on stabilization and resumption of daily life.

Treatment of eating disorders follows the first two steps and then often diverges. Since eating disorder thoughts are so connected with identity, recovery needs to lead to the creation of a new identity separate from the illness which involves more than just work, hobbies or even relationships. This step is existential, a dive into what makes life matter, how life can be valuable and how each of us feels comfortable enough to take on each and every day.

I can’t ever explain to people where recovery might take them. First, they won’t ever believe it early in recovery. Second, they are so far from identity at the start and only want relief and progress. Third, and most important, identity feels foreign early in treatment.

The process of getting better itself allows room for to grow into oneself and even begin to exist separate from the eating disorder. The beauty of transitioning from being so lost to an existential birth makes recovery seem miraculous.

The demands of learning about oneself in such a profound way lead to personal growth rarely present in modern life. Ironically, the pain of an eating disorder results in the growth of a person more able to engage with the world than most of us. Although i don’t wish this pain on anyone, the possibility of a full life afterwards is worth it.

Why Won’t the Number of People with Eating Disorders Decrease

What about our society leads to such a high incidence of eating disorders? With such a plentiful supply of food, shouldn’t we spend more time focusing on other things? How can diet and weight still be so integral to self-esteem in the modern age?

These questions are the tip of the iceberg in the social experiment of hyper-focusing on body and weight in our culture. At a time when there could be space to focus on so many other, more important parts of life, it’s curious and confounding why food and weight consume so many people’s lives.

Some causes for the decades-long epidemic of eating disorders are clear. Thinness continues to be prized as a sign of wealth, success, health and control. Fat phobia is pervasive, and the combination of social media and the GLP-1 medications reinforce the urgency to be thin.

Persistent messaging from the food industry, the growing wellness voices and the medical establishment promote a specific diet (which changes regularly according to the latest fad) and weight management as the ultimate signs of health. Even though the medical data is slim, industry promotes a clear idea that thinness equates with health, and the masses follow blindly without questioning the data or the intent.

Social isolation in our homes, blinded by our addiction to phones and the constant queuing of content, leaves so many of us bereft of meaning, a void easily filled by the lure of dieting and weight loss.

The social pressures that lead to an unending number of eating disorders is even more insidious. Social media limits the idea of what success looks like. Young people, no matter where they live, see the same media with the same images dictating the their body is an integral part of success in their future.

The most important part of this experience is the manufactured images of young people who promote thinness and unreasonable diets as a sign of a good life. With the sense that there are fewer opportunities in their future, limited ideas of what constitutes success and relentless images, a life consumed by dieting and body obsessions is the norm.

As I have written in this blog many times, dieting is the number one risk factor for developing an eating disorder. The daily lives of young people set them up to consider dieting virtuous and almost a given in life, hence the constant stream of people with eating disorders.

Once these patterns of eating and of focusing on food and body develop, most people struggle to escape this way of life. Condemning young people to build an identity in the context of body and food thoughts already leaves them at the mercy of an obsessive wave of thoughts that our minds struggle to escape. Many of these people will develop eating disorders. Most of the rest will remain mired in disordered eating and body image concerns for years to come.

Our society needs to value humanity over thinness and diet in order to escape the cycle of eating disorders. Life remains empty and hollow when food and weight represent the most life can offer. The voices which can broadcast what actually does matter in life need to be heard for us to finally see a downturn in eating disorders.

A Handbook to Find Eating Disorder Treatment

The eating disorder treatment field is large at this point. Clinicians of all sorts, doctors and treatment programs all profess an expertise in treating these illnesses. However, there is no sanctioned body or degree that confers the knowledge base necessary for adequate eating disorder care. Anyone can talk about their expertise, and there is often no easy way for someone seeking help to find evidence to vouch for a clinician’s or program’s experience.

Armed with this crucial information, patients and families need to interview prospective treatment providers, seek outside corroboration for any treatment program and attempt to gather background about treatment style and success.

Recent posts in this blog highlight how eating disorder treatment can bear significant risks due to outside, largely financial, influence. Private equity companies are very involved in aspects of care and more focused on profit than recovery. Patients in programs or individualized care are at risk for exploitation or even abuse. The lack of qualification of many clinicians means many patients may stay unwell due to inexperienced care.

There are a few ways to ensure appropriate clinical treatment for people with eating disorders.

First, interview a large number of possible caregivers. In addition to asking about their background and experience, people seeking care need to understand what a treatment plan looks like, how flexible the plan can be based on shifting circumstances and what options there are for a larger team to coordinate care. The connection between patient and clinician as two individuals is just as important in order to consider moving forward. Communication will be essential for recovery and needs to feel smooth and relatively easy from the start.

Some outside corroboration of the clinician’s or program’s care is also necessary. Without any external feedback, it can be hard to trust the process going forward. At times, this may be impossible, and my recommendation is then to proceed carefully with established checkpoints to reflect on the treatment process and plans going forward.

Despite the current more nefarious elements of eating disorder treatment, no one should despair about finding meaningful care. Eating disorders are no longer an outlier in psychiatric treatment. Many providers have experience helping people with eating disorders, and there are some programs still giving thoughtful care. Just because anyone trying to get help needs to be mindful and vigilant is not cause to be hopeless. Proceed cautiously and the right path for recovery is more accessible than ever before.

How Vulnerable People with Eating Disorders are at Risk of Harm and Abuse

Patients who are sick with eating disorders are vulnerable in our society for many reasons. They are often desperate for help and unsure where to turn. They are both held hostage by the illness and ready to accept any promise of help. They are physically and emotionally compromised and easy to take advantage of.

Even more, people with eating disorders don’t receive much compassion and understanding for their illness. They are blamed for their problems and told they should just stop the behaviors and eat—not very comforting for people who are really sick. The denigration only reinforces self-recrimination at the heart of the disorder and often leaves people feeling like they deserve poor treatment.

One result of the epidemic of eating disorders is that investors see the potential for profit. The private equity takeover of residential treatment programs is a testament to that reality. Instead of finding access to improved care, patients end up in a revolving door of care, sometimes for years, as long as insurance coverage will pay for it. Endless treatment has no benefit, but the system can make a lot of money on vulnerable people.

A more terrifying trend for these patients, both in hospital settings and treatment facilities, is overt verbal, physical and sexual abuse. Vulnerable patients tell me about settings where they are verbally abused for not eating, treated like prisoners forced to comply with orders and coerced into abusive acts by predatory staff.

I am sure I am not the only clinician who hears these stories. It has become standard to do trauma therapy for people abused in treatment and frightened of getting health care for their eating disorder. I have a harder time recommending inpatient or residential care based on these terrifying and disturbing stories.

Empowering sick and scared people to stand up for themselves is often too much to ask. If a heartless financial industry is bent on capitalizing on a vulnerable population, even an eating disorder clinician can’t be clear about the right decision for a patient.

The result is an exploitative system without any guard rails. I don’t see how clinicians can make much change in the larger picture other than trying to do the right thing on an individual basis. For now, I am very judicious about who is a reasonable candidate for inpatient or residential care, and then I track those patients carefully as a form of protection.

It’s hard to stay hopeful when access to care has led to seemingly widespread abuse. In the years I hoped for more access to care, I could never have imagined such a horrifying result.

Treating Anorexia and MCAS

In the past, a number of posts in this blog focused on chronic anorexia, people trapped in years of restriction, relentless thoughts about body and weight and no path towards recovery. Some of these people found a middle ground where they ate enough to get by and live a life limited by the eating disorder but also somewhat stable. Others remained very sick; psychiatric care was primarily harm reduction and sometimes palliative care.

The sickest of that group often didn’t survive the illness.

Recent discoveries about medical conditions connected with anorexia uncovered the theory that the sickest cohort actually has an undiagnosed medical condition which left them so disabled, one I have mentioned here recently, mast cell activation syndrome (MCAS).

It’s almost shameful for me to think back to how I saw a variety of symptoms as a result of anorexia rather than signs of a separate but connected illness. These patients experience extreme pain and bloating from eating anything, intractable abdominal distention and constipation, chronic joint and body pain, regular dizziness with passing out, cognitive effects with brain fog and many other symptoms.

Clinicians who treat people with eating disorders still assume these symptoms are a result of chronic malnourishment and refuse to even consider that another medical diagnosis is present. Some people with chronic anorexia don’t have signs of MCAS and they aren’t as sick. For people with both illnesses, treatment providers tend to blame the sickest patients with chronic anorexia and often refuse to treat them because they “won’t comply with treatment.”

Patients with anorexia and MCAS need to be diagnosed and treated earlier so that the MCAS doesn’t become as severe. I have written about histamine blockers like allergy medications and Pepcid, low dose naltrexone and a variety of other mast cell stabilizers before. Treating patients earlier for MCAS can prevent the most severe cases.

I am also seeing a significant number of patients with more severe anorexia and MCAS do surprisingly well on very low dose GLP-1’s. They don’t experience appetite suppression, slowed digestion or weight loss like most people do. In fact, these patients tend to feel more clear hunger and fullness cues, improved digestion and a sharp decrease in discomfort and pain after eating.

It appears to me that GLP-1’s likely treat a gastrointestinal hormonal imbalance and decrease inflammation, very different results from how most people experience the drugs.

Anyone with chronic anorexia needs an evaluation for MCAS. Treating the inflammation symptoms can help make it easier to eat regularly and decrease eating disorder thoughts. Treating MCAS makes recovery from anorexia possible for some people even though the process of treatment remains extremely challenging. Addressing the medical and psychiatric causes gives people with chronic anorexia a fighting chance to get well.

The Isolation of Having an Eating Disorder

Having an eating disorder is a very lonely experience. The relentless thoughts about food or weight, about the right food choices or about how one is perceived overwhelm daily life. The demands, both emotionally and physically, of managing an eating disorder take over one’s life. The behaviors take priority over everything.

Due to all these pressures, there is very little room for other parts of life: family, personal and professional relationships, activities and even any sense of joy. The things well people take for granted are almost an afterthought to people with an eating disorder.

Eating disorders also hold most of their power through secrecy. Exposing the heart of the illness feels very shameful for people to even consider. The underlying feeling of shame is often cloaked in superiority or necessity or self-hatred. There is no consideration of understanding one’s experience at all but only that what they need to do each day must be done. The secrets of the eating disorder are typically what keeps people stuck for long periods of time.

The mundane interactions of daily life often trigger the most painful emotions for someone with an eating disorder and thereby reinforce the secrecy and shame. Saying “How are you?” can feel like a reproach since they feel so bad all the time. Mentioning food or weight at all becomes a devastating reminder of their suffering. A doctor’s appointment inevitably leads to a comment about health, weight and nutrition that cements how much they feel like a failure. The list goes on and on.

This experience of always being misunderstood, always being alone and always hiding behind secrets and shame is a symbol of the ultimate pain of suffering with an eating disorder.

With all the focus on GLP-1’s, inflammatory illnesses related to eating disorders and the onslaught of private equity financing of treatment centers, the true experience of someone with an eating disorder remains unchanged. These people feel very alone, deeply misunderstood and consumed by thoughts and behaviors which derail their lives.

Accordingly, treatment still must focus on understanding, empathy, kindness and care. It’s true now as much as ever that people get better when they receive these simple gestures in their lives day after day as they find their way through the complexities and frustrations of recovery.

The loneliness of an eating disorder is a painful experience. A provider who can be human and genuine, while also being knowledgeable and extremely caring, will give enough to foster the growth and joy recovery can bring. The other avenues involving medical comorbidities and adjunctive treatment are important too, but we all must remember that kindness and care remains the first necessary steps in successful recovery.