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.

On the Struggle for Women with Eating Disorders to be Diagnosed with ADHD

Medical research and care has always been focused on the health of men, typically white men. This fact is based on reams of research over decades focused primarily on this cohort. Many seminal medical articles solely about men remain the foundation of treatment. Subsequent research in many specialties rely on the original research as a springboard for further exploration and growth.

Although there has been some change in this truth of medicine, it’s difficult to overcome decades of work built upon the well being of one cohort of our population. Women’s health is often either sidelined or reliant on insufficient data.

One great example is hormone replacement therapy (HRT) for women in menopause. Flawed studies that showed a higher incidence of cancer from HRT led to decades of misled doctors shying away from HRT. Finally, years later, the benefits and minimal risks of HRT are evident, and care for menopausal women has been transformed, but at the cost of many women’s well being.

Eating disorder treatment falls into the same category. Eating disorder patients are primarily women, and research has been limited in many ways. Treatment is often run by finance companies, and research into new, more effective treatment is either unhelpful or often irrelevant.

A recent change in eating disorder treatment is the frequent combination of eating disorders and Attention Deficit Hyperactivity Disorder (ADHD). The overlap of these two diagnoses turns out to be very common, and treating ADHD improves eating disorder treatment for many patients.

The driving force for this new revelation is women on social media sharing their experiences and gradually recognizing their common concerns. Clinical care has been slow to catch up with many providers still believing that a patient with an eating disorder who mentions ADHD is seeking risky medications rather than asking for help.

ADHD historically has been diagnosed largely in boys. Girls often are overlooked due to a lower incidence of hyperactivity which is a red flag for teachers to recommend an evaluation. Girls often get by in school and do well enough by finding ways to compensate for the challenges of ADHD in an academic environment.

These adult women with ADHD seeking help were often overlooked as children and now find that modern psychiatry is not prepared to help either. There is no valid way to assess ADHD in adult women. The standard testing is for children. Treatment guidelines for adults are not clear either.

This one example, among many, shows how medicine frequently fails women. At least for now, psychiatrists need to find ways to diagnose women with ADHD and start treatment and education.

In eating disorder treatment, diagnosing and managing ADHD will improve outcomes and recovery significantly. The inattention, racing thoughts and struggle to complete tasks are all often triggers for eating disorder behavior. Treating these symptoms can help someone find their way to recovery a lot more easily. As a field, the eating disorder treatment world will do better for their patients by recognizing that ADHD diagnosis and treatment are critical for success.

Recovery Amidst Our Collective GLP-1 Delusion

There is a fine line between glorifying thinness and eating disorders. At times that line is more clearly demarcated than others, and the process of recovery is easier in that cultural moment. When the line is blurry and even hard to see, getting better from an eating disorder is a lot harder.

We’re in one of those challenging moments now.

GLP-1’s have taken over our world. Everyone seems to justify trying them: large and small people, sick and well, diabetic and anorexic. The list goes on and on. Some people are just curious. Even the suspicion that the president is taking one made the news.

Many people, more likely those prescribed too much or inappropriately, don’t eat very much. They feel full quickly, snack instead of eat regular meals. Many lose weight rapidly, often too rapidly, and start to seem sicker the longer they use the shots.

Culture and medicine call these people “healthy.” All of a sudden, looking very thin has become too common in some communities. Instead of calling out this behavior as a dangerous trend anyone can see easily, the mantra is that eating a lot of protein will solve the problem, all to justify getting too thin and sick.

The nonsensical approach to the GLP phenomenon is confusing at best and frightening at worst. Starving and losing a lot of weight is the new goal. Where are the sane minds pointing out the insanity of this collective state of mind?

Add into this morass those in the midst of eating disorder recovery, people struggling each day to complete a meal plan, to adjust to changing body shape and to manage the emotional maelstrom that comes with the process. How do these people ignore the shift around them towards rapid, dangerous weight loss? How can they forge ahead to get better?

The underlying philosophy of weight loss at all costs isn’t new. We just have a new, powerful tool to make it happen, at least for now, one that medicine treats as if it is the second coming.

People in recovery need to use all the tools at their disposal to move forward. They know the pain of an eating disorder, how bad they feel physically and emotionally. They know how personal and professional goals go by the wayside when they are sick. They know how they get trapped and have no joy in their lives. They know, deep down, that no pleasure from weight loss is worth it. Even if the world is playing with fire with the GLP-1’s, they know that recovery gives them a chance to really live.

I don’t have a new or more convincing argument about why it’s important to recover. The thought process remains the same no matter what newfangled medication or weight loss program emerges. The focus on living well has to outweigh the desire for thinness. That’s the way this process works.

Dropping Patients Who Aren’t Improving is Very Risky

Many clinicians in the eating disorder field feel comfortable discharging patients who aren’t getting better. If a patient isn’t making changes with food, is at a low weight and/or has abnormal lab values and isn’t making steady progress, doctors, therapists and nutritionists alike feel justified in saying they can’t help anymore. The only option is a higher level of care.

I have written about this standard protocol of treatment many times in this blog because I continue to be shocked that providers who are supposed to help struggling patients can so easily drop them.

The explanation for these decisions is twofold. First, if a patient needs more care, allowing them to continue substandard care will lead to a dangerous outcome. Second, and more to the point, clinicians don’t want the liability of treating a patient who might get very sick on their watch.

In the end, the decision to drop a patient always benefits the provider, never the patient.

A treatment team is obligated to try to help a patient in the process of recovery. Therapy can shift to focus on all the reasons a patient is scared to get more help or to make progress with food. The team can consider support in other ways that represent a compromise between higher level of care and continuation of the current plan. Medical interventions can attempt to manage the effects of the eating disorder with electrolyte or vitamin supplementation.

Dropping a patient is not the only option.

The very harsh decision to end treatment with a patient makes them feel like the eating disorder is their fault and that recovery is just a matter of willpower, very much not the reality. The clinical misjudgment reinforces the patient’s belief that they are the bad one and that the idea that they are damaged must be true. Why else would the team drop them?

In fact, a standard type of therapy used for eating disorder and substance abuse treatment is called motivational change. The first step in getting help is called the precontemplation phase. In this step, the patient is considering real change and needs the space to be able to sort through their own internal obstacles in order to move forward.

Why can’t eating disorder clinicians provide these steps? Why can’t the same clinicians discuss the medical risks at length and still continue to provide support? Why drop someone trying to figure out how to get better?

Recovery from an eating disorder is hard work. The physical steps of eating more food, tolerating fullness and digestion and seeing one’s body change are very hard. The psychological steps of feeling emotions more intensely, exposure to others without the numbing of the eating disorder and losing the ways an eating disorder feels like a protector are hard as well.

A knowledgeable clinician understands these struggles and can provide meaningful care and attention to help them move forward in recovery. Isn’t it an obligation for all of us to provide this care?

Why Eating Disorder Recovery Must Focus on Being a Person, not an Illness

Often people with mental illness describe that they feel invisible. They experience being treated as an illness and almost as a deficient human rather than a real one.

Interestingly, newer lay terminology refers to “my anxiety” or “my depression” as a way to exert ownership over symptoms while separating and learning about one’s identity. The downside of the shift in language is to confuse ownership of symptoms as a core part of oneself, not a manifestation of mental illness or even just the human experience. People tend to conflate “my” psychiatric symptom with who they are.

Those with eating disorders experience even more powerful forces to lose their identity completely. In a world where food and weight already replace other forms of identity, there is little room to find oneself outside one’s body to start off.

In addition, eating disorders often substitute for identity as a form of both achievement and coping skills. It’s hard to replace such a powerful way to exist in the world despite the personal cost of having an eating disorder.

Last, treatment providers talk a lot about people with eating disorders as if they are the illness themselves. They indicate that any opinion or belief the providers disagrees with is an “eating disorder thought.” The effect of disregarding a person’s thoughts and feelings leaves no room for someone to be themselves or learn about themselves. This interaction only confirms the eating disorder as one’s identity.

I frequently note that the people who are the sickest and who have been struggling the longest despite adequate care have had no space to be themselves. The lack of room to freely and safely express one’s thoughts leads to an imperative to stay hidden and protected by the eating disorder. The symptoms provide a shield against their own feelings and others’ demands—a modicum of safety in a very threatening world.

Despite best efforts to monitor medical symptoms and lab results, to offer higher level of care or to show an overarching interest in weight restoration, standard eating disorder treatment often falls flat. Without any desire to listen to the person and what she has to say, there is very little chance of getting well.

People with eating disorders are still people. What they think and feel matters greatly. In order to go through the struggle to get well, they need to know that people around them see them and value them as individuals. There is no point in getting better to just be a shadow of a human being. The goal is to become truly oneself in the process.

Why is there a Problem Misdiagnosing Eating Disorders

The concept of eating disorders has become very present in our daily culture. As opposed to a few decades ago when these illnesses were overlooked and often misdiagnosed, doctors, family and friends are now very aware of these disorders and quick to jump to their own personal assumptions or conclusions, right or wrong.

In the past, I often had to explore the possibility of an overlooked eating disorder diagnosis.

These days it is much more common for eating disorders to be seen as the primary issue for people with any eating symptoms at all, despite evidence of other medical or psychiatric issues which may be the primary illness that needs to be treated.

The reasons for this about face are many. Eating disorders are a frequent topic in regular conversation and social media, which increases awareness but also dilutes the true definition of these illnesses. The rapid growth of the eating disorder treatment industry spreads education but also falsehoods to clinicians and families about these disorders and appropriate treatment. Also the decades of experience knowing about eating disorders makes clinicians and others more likely to be more aware but also makes it easier to jump to conclusions.

The ignorance and lack of access to care have reversed almost completely in recent decades and led to a transformation in how to approach eating disorders. Any sign of disordered eating has become a reason to diagnose and often send people to residential treatment without considering any other options. I see more people with other primary issues who have undergone intensive treatment before even having a thorough work up for all possible causes of their symptoms.

First and foremost, people with suspected eating disorders need to see a primary care doctor and psychiatrist to consider all the possibilities and ensure each person receives adequate and individualized care.

Eating disorders can be a misdiagnosis of many psychiatric conditions including depression, psychosis, bipolar disorder and OCD and many others as the primary issues.

Endocrine problems, inflammatory disorders, a vast number of gastrointestinal problems and neurological conditions can masquerade as eating disorders as well.

No program focused on eating disorder treatment will work through these medical options to be sure they aren’t overlooking causes for the condition. These programs have a set plan for treatment which does not include a search for other diagnoses. Many people cycle in and out of treatment and don’t get better but also don’t have any doctor looking into why they aren’t getting better. The assumption is always that the person isn’t “trying hard enough.”

I strongly advise anyone with a new diagnosis of an eating disorder to seek out a thorough medical and psychiatric assessment to rule out any underlying causes. Doing so can avoid the pain of inappropriate care and speed up the process to get well.