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.

The Risks of Easy Access to GLP-1’s for People with Eating Disorders

As eating disorder clinicians grapple with the potential benefits and risks of the GLP-1’s for our patients, it’s clear that only time will tell how to use them. The sudden availability of the drugs to all patients without medical supervision changes the circumstances meaningfully.

The medications as of now have two uses for people with eating disorders. The first is to help with inflammation which is common for some people with these illnesses. As I have written in recent posts, mast cell activation syndrome (MCAS) appears to have a higher incidence for people with eating disorders. The inflammation caused by mast cells which elicit a strong and inappropriate response of swelling, pain and many other symptoms unnecessarily can be tamed for some people with GLP-1’s.

Second, this class of medications affects hormones related to the gastrointestinal system. For people whose eating symptoms seem connected to dysfunction in these hormones, the drugs can improve hunger/fullness cues and metabolism. However, these benefits don’t cure an eating disorder, and still need just as much active work in recovery. As of now, there is no way to predict who will or will not respond without trying the medication.

Other than these two uses, there is no clear reason to try this intervention to help with eating disorders, and the risks are high.

People with eating disorder frequently have a strong urge to lose weight at all costs. Since the GLP-1’s are marketed largely for weight loss, the online shops sell it only for that purpose and usually recommend an aggressive dosing schedule just to lose weight. At the same time, these programs do not screen for eating disorders and don’t meaningfully assess if patients tell the truth about their intentions.

The result is people with eating disorders who aren’t satisfied with moderate effects of the drugs and then take high doses, eat much less food and lose dangerous amounts of weight only to relapse once the can no longer tolerate the drug.

The medications also don’t curb the eating disorder thoughts, propelled by shame, to restrict, binge or purge. Decreasing food noise is not the same as decreasing eating disorder thoughts. When these thoughts don’t subside, people tend to increase the dose desperately hoping for relief from something the medications don’t affect. Again, the higher doses cause problems with no promise of curing eating disorders symptoms.

Last, the medications, even at lower doses, can decrease hunger-driven binging for some people while causing weight loss. In this situation, people feel somewhat better but also worry about weight gain and choose to restrict more out of fear of weight gain. The restriction leads back to more binging. In this way, the medication encourages eating disorders behavior as a way to survive.

Overall, medicating eating disorders patients with GLP-1’s without any supervision or guidance is very risky. It’s very likely people will take much too high doses, find themselves with worsening behaviors and incredibly demoralized by the idea that this magic cure didn’t work. I am sure these medications will and already do play a role in eating disorder treatment, but they are just a tool. They aren’t the cure everyone is looking for.

The Free Market of GLP-1’s

One recent change to the pharmaceutical market is “direct to consumer” prescriptions. This moniker means that people can buy their own medication without a prescription or real guidance from a prescriber. The pharmaceutical companies’ capitalist drive for profit has transcended even the sacred breach of medicine to begin to allow people to choose their own drugs.

The newfangled experiment in medications recently extended to the GLP-1’s with all the attendant risks of self-diagnosis and self-guided treatment.

From the solo practitioner physician, I can see that the road to this point does not seem to be intentional. Shortages of the GLP-1’s initially due to underestimating the wild success of these medications led the government to allow for pharmacies to compound the drug, essentially bypassing the patent, so pharmacies could mix their own version and sell it at a discounted price.

Once that door opened, there does not seem to be a way to close it. The exact reasons for not closing the loophole are unclear. It could be the market forces, exceedingly high demand or the cultural conceit to overvalue thinness at all costs.

There still is the brand version of GLP-1’s that health insurance will cover, but people who want to try the drugs for any reason can find a cheaper version at a multitude of online shops. The barrier to prescription is minimal: a short call with a medical practitioner, who won’t question the reasons to try the drugs, followed by a prescription. As long as one pays, unlimited prescriptions at a dose of your choice awaits. There is no assessment of medical need or risks, just access to powerful drugs whose long-term effects are still very much unknown.

This next step in the GLP-1 experiment is surprising and has caught many people off guard. It’s hard for doctors to push back against a market that consumers have access to and have to accept that many people will be dosing their own GLP-1’s.

Gradually, people are turning to the drugs in the short-term as a weight loss tool rather than an ongoing medication. They are increasing and lowering their dose at will while experimenting with how their body responds to the drug. The potential outcomes and risks remain unknown.

What does this mean for people with eating disorders? How will this affect the presentation and treatment? How does a person in recovery cope with this reality? I’ll try to answer these questions in the next post.

Eating Disorder Recovery Remains Hard Even With New Advances

Despite numerous new avenues for eating disorder treatment, recovery remains challenging. It takes effort, perseverance and resilience to move through the process and get better.

I have written about the way new medications might be a useful tool, how concomitant medical diagnoses may inform treatment and how access to all forms of care can be beneficial. None of these changes affect the fundamental challenges in recovery.

Eating disorders reflect a profound change in eating behaviors from hunger and fullness cues to meal/snack structure to the underlying purpose of eating. Food is also a basic necessity for human survival, so much of the thoughts and behaviors around food are encoded deeply and unconsciously in our brain function. We delude ourselves into thinking we have conscious control of eating only to realize how much our bodies dictate how and when we eat.

Although new directions for treatment seem promising on the surface, none of them address the subconscious nature of how we eat. In order to change the embedded behaviors, we need to make consistent, conscious effort to change unconscious patterns.

For example, walking is largely an unconscious activity. One can change one’s gait in time but only with concerted effort to change every step until the new pattern becomes unconscious.

Much of eating disorder recovery is about similarly changing a deeply encoded pattern. The added issue is that the person needs to find motivation to do laborious work and forgo the very strong emotional benefits that come with behaviors.

Recovery demands the desire to find new ways to manage emotions, the effort to change eating patterns and the willingness to work on both of these endeavors day in day out until one becomes capable of managing emotions and food more comfortably.

No medication, medical diagnosis or program will replace the necessary steps to get better. Even though I continue to learn about all the ways someone with an eating disorder can recover, the fundamental path of recovery remains unchanged. People can get better and need to commit to the longterm process and know that they can be well on the other side.