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.

Thinness Does Not Give Our Lives Meaning

The drive for thinness is at the heart of the eating disorder epidemic. Countless research studies show that the insidious nature of glorifying thin bodies through all types of media convinces us to believe that losing weight is the way to a good life. Short-lived cultural shifts towards accepting different human bodies never last long. Too many forces in our society benefit from an audience captivated by thinness and susceptible to any market force that promises the miracle of weight loss.

I have written before in this blog how industry benefits from the drive for thinness. The diet industry promises the magic goal of weight loss even though research has proven unequivocally that diets don’t work. The exercise industry focuses on weight loss despite evidence proving health benefits but not sustained weight loss from regular activity. The food industry plies us with a smorgasbord of supposedly healthy foods and simultaneously the most delectable options when everyone gets too hungry. And now the pharmaceutical industry finally gets to offer the holy grail for weight loss.

A capitalist society can’t get enough of a public willing to spend their last dollar on the promise of sustained weight loss.

There is one other weakness in this moment that heightens our vulnerability. Modern life isolates each of us in our bubble, surrounded by technology, addictive content providers and the increasingly limited ability to find connection and satisfaction in other parts of our life. Technology may make things easier in some ways but doesn’t replace our human need to find meaning in relationships or the ways we interact with the world. Passive movement through the world fills our time but doesn’t allow us to experience the world fully. Our brains are wired for interaction and engagement in order to feel satisfied. Experiencing content on its own won’t suffice.

Increasingly, the desire to lose weight is one of the primary ways people search for identity and meaning. The goal of thinness itself is empty which is why people are never satisfied with the results. That drive to lose weight at all costs, when particularly strong, often becomes an eating disorder.

The forces for thinness are broad and powerful. These days no other goal is equally revered or desired.

We need to constantly be reminded that other avenues for satisfaction in life exist. Instead, powerful industries constantly urge to follow the desire for thinness and hope for the best. The central force for weight loss and the epidemic of eating disorders is societal. Messages promoting weight loss push us towards this meaningless desire each and every day.

In the end, the apotheosis of thinness in our culture begs a question: why is it so hard for the modern human to figure out what actually matters in our lives?

Recovery in a Culture Glorifying Extreme Thinness, Again

Research for decades shows that the media images about body shape and size have an enormous influence on how we see ourselves and the world. The changing landscape of those images affects how people, especially young people, track self-image and self-worth.

This truth started with the creation of mass media in the 1960’s in national magazines. Media evolution exploded decade after decade and now has a much wider and relentless scope in social media. The juxtaposition of media-influenced expectations about how a person should look with our own photos and selfies creates an only too obvious descent into obsessive focus on body.

Right now, the shift from body positivity a few years ago when people saw images of a wider variety of shapes back to extreme thinness at the current moment is complete. The result is a reversal of any attempt to broaden cultural expectations and accept what our bodies actually look like. Now only thin is in, and extreme thinness is in as well.

I have written many times in this blog that dieting is the number one risk factor for developing an eating disorder. Most people who restrict food won’t be able to do so for long before hunger takes over and makes them eat. For people genetically and environmentally predisposed, restriction of food appears to trigger a metabolic and psychological switch that starts the process of developing an eating disorder.

The more prevalent the drive for thinness, the more likely people will diet and the more people will develop eating disorders.

In addition, people with eating disorders feel more vindicated to fight to be as thin as possible and feel validated to follow the eating disordered thoughts in a media environment such as we have now. People who are in the middle of eating disorder recovery have a hard time struggling to maintain the daily effort of getting well and often abandon the process to refocus in weight loss at all cost. Even when they do come back to recovery, they start back in the original hole again.

It’s hard as a clinician to push back against that current. No words of encouragement in therapy match the scope of the cultural trend towards thinness. The result is watching a lot of people become more entrenched in their eating disorder again. Treatment turns to working to prevent the most serious consequences of a slip and preparing to be supportive and encouraging when the eating disorder gets a lot worse.

It’s demoralizing but also natural in the fight not just against eating disorders but against the cultural forces which cause these illnesses in the first place.

As long as we as a society glorify thinness, eating disorders, sadly, are here to stay.

The Perils of the Quick Fix Promise for Eating Disorder Patients

The wish for a quick fix for an eating disorder is the overarching dream for many people seeking help. The universally unfulfilled promise of recovery in treatment programs eager to sweep up more insurance money or the magical cure of GLP-1’s makes the slow and difficult challenge of real recovery much less appealing. Why engage in the challenges when a supposed miracle cure is available?

The reality for eating disorder treatment is that people are going to make their own decisions and often opt for the fast result and hope for the best.

Sadly, any eating disorder clinician knows that there is no quick fix. When there is a treatment program that actually does more than initial stabilization, providers will do everything possible to help their patients get that support. When medication fixes the eating disorder symptoms, enhances recovery or allows for relief of medical symptoms at the root of an eating disorder, patients will be taking those medications.

At the moment, neither of those exists.

These decisions about treatment largely rest on the patient now. Professional advice is still helpful, but the capitalist practices changing health care has come to eating disorders as well. Patients drive their treatment more than ever before and can consume whichever path they prefer.

Treatment programs urge patients who contact them to attend a program with less and less attention paid to what is right for each individual patient. GLP-1’s are available to anyone indiscriminately so people with active eating disorders are forging a new direction in their illness by suppressing appetite and losing weight leading to unknown consequences.

There is no reason to lament the direction of care for people with eating disorders. The path of health care in our society is set, and providers need to adapt to new circumstances.

Any treatment plan needs to focus on stability in a meal plan, adequate nutrition, managing eating disorder symptoms and improving health. The emotional trials of recovery are central no matter these other forces. Recovery may progress despite these new trends rather than in conjunction with them. But that is where our culture is heading. These forces aren’t new.

The people most at risk are those seeking help who are desperate and willing to take any risk necessary. Financial incentive of the eating disorder and weight loss industries overrides any one person’s well-being so patents will need guidance, compassion and kindness to continue on a path to getting well.

The future is unknown, and the outcomes very much unclear. There has not been this much uncertainty and concern about how eating disorder recovery will look in the future. What’s clear is that eating disorders will not diminish with these current trends, and the need for support in recovery is as imperative as ever.