Does an Eating Disorder Diagnosis Mean Losing Your Humanity?

What happens if someone with an eating disorder chooses to live their life with disordered symptoms? What if they either don’t want to get better or don’t want to go through the painful, and often harmful, treatment process?

Some doctors call this harm reduction or palliative care. Others call it unethical. Which description is appropriate?

Thus far, there isn’t much appetite to talk about these options in treatment. Providers are typically closed minded and even self-protective when it comes to looking into different ways to approach long-term care.

Patients are presented with a standard approach for care which includes therapy, nutrition counseling, psychopharmacology and a primary care doctor. If symptoms are severe, the team will consider higher levels of care: outpatient programs, residential treatment or hospitalization. If patients refuse more care, most practitioners will refuse to continue treatment, ostensibly for the sake of the patient, but largely to avoid liability.

Many of these patients with long treatment histories have either experienced harm in treatment settings or don’t want to comply with the indignities of being locked up in a mental facility. They are entitled to make that choice and still receive more help if they so desire.

Instead, patients who choose not to go to a higher level of care often are abandoned by their support and made to believe their decision is influenced by the “eating disorder thoughts.” In other words, they are not entitled to make a personal decision without blame and shame for making the “wrong” decision. Somehow, the diagnosis of an eating disorder also means losing one’s autonomy.

Why does this psychiatric diagnosis also justify losing independence and the basic human right to choose your destiny?

In my experience, many people with eating disorders are exquisitely attuned to other people, can see emotional and non-verbal cues acutely and accordingly make clear decisions. Other people may not agree with their decisions around their eating disorder but also don’t often try to understand how those decisions might make sense for each individual.

There are other forces connected to eating disorder treatment that seem to be more powerful than simply helping a set of people get better. Financial gain by private equity companies is the best example of exploitation. As I have written many times in this blog, eating disorders are one in a long line of mental illnesses used to justify disempowering a population.

For a country obsessed with weight and thinness, there appears to be some unconscious need to force a group of people to eat large amounts of food against their will while so many other people are lauded for undereating, primed even more by the GLP-1’s.

Only privileged populations are allowed to restrict their food or take medications to lose weight. Others are instead diagnosed with a mental illness and punished accordingly.

Who determines which category we fall into? How can this hypocrisy go unnoticed in our country for decades at this point?

I consider the answers to these questions and more in the coming posts.

Being Judgmental Never Belongs in any Eating Disorder Therapeutic Relationship

In successful eating disorder treatment, a non-judgmental approach is the foundation of therapy. The person seeking help needs to see from the start that the relationship is based on mutual respect, building trust and an immediate sense of being on equal footing.

If the there is even a hint of judgment at the beginning of treatment, then it behooves the person to look elsewhere.

People with eating disorders feel very alone, seek solace primarily, if not solely, from their eating disorder and have come to believe that other people need their help and support but that they need to figure life out themselves.

If there is even an inkling that the therapist will be needy in the relationship, that is also an immediate red flag.

Therapists can show they aren’t judgmental not just through words but through action.

The food journal is an incredibly personal and exposing step for anyone with an eating disorder to take, in all likelihood more vulnerable than any other step in therapy. If the therapist approaches the journal as a collaborative exercise to help learn about both the person and their eating disorder without judgment, the journal becomes not only informative but also a step towards trust.

Therapists also need to take in new and important details of the person’s life and eating disorder with care, concern and compassion. People seeking help are used to clinicians overreacting. Therapists often jump to a safety contract or need for higher level of care when the they feel overwhelmed or scared. It’s a big step towards trust for a therapist to attempt to work together rather than react immediately out of fear.

Third, respect for the person’s autonomy, individuality and judgment builds bridges to trust. Clinicians too often conflate an eating disorder with a lack of reason and functionality as an adult. Much to the contrary, people with eating disorders often have a very astute understanding of the people around them and an acute ability to perceive nonverbal communication. The eating disorder serves as protection from people but not a sign of poor decision making.

Establishing a relationship without judgment leaves room in therapy to explore one underlying experience in most people with eating disorders: shame. Judgment reinforces shame and also hides it from view. No one will allow this painful feeling to emerge in a relationship devoid of trust.

Shame represents the deeper repudiation of oneself and the ultimate fear of being true and real in any relationship. Shame confirms the feeling of not being good enough, not having value, not being lovable. The deepest shame can be hidden under an eating disorder but still erodes any sense of hope and a future.

If judgment pervades a therapeutic relationship from the start, shame forms the bedrock of that relationship and practically eliminates any chance at getting better.

For anyone seeking help for an eating disorder, the first and most important experience to avoid in therapy is feeling judged. I beseech people seeking therapy to pay attention to feeling judged and instead feel able to look for a new therapist who can create an environment moving towards recovery. 

What the Journey of Eating Disorder Recovery Actually Looks Like

Sometimes eating disorder recovery looks like a straightforward, if not simple, path. Work on eating a meal plan, restore health and weight and then waltz off into a well body and healthy life.

Anyone who promises this plan and utopian endpoint is not telling the truth.

Eating disorder treatment is a journey that is deeply introspective with unexpected twists and moments of fear and hopelessness and others of inspiration and joy. In between, there are long stretches of monotony and the mundane.

Recovery looks a lot more like daily life but just more intense. The journey from the reliable prison of an eating disorder combined with the numbness and isolation of that life to the immediate connection to and experiencing of the real world is a lot to handle at first. Being so much more exposed to outside reality and the internal experience of more emotion can be overwhelming, especially since eating and body changes accompany these steps.

Over time, it becomes clear that treatment is a much longer path. It’s necessary to have a companion, aka a therapist, who is knowledgeable, patient and kind. It’s important to try to surround oneself with at least a few other people who care. It’s essential to learn to have compassion and kindness for oneself.

There will be many bumps in the road. The negative thoughts about oneself stay present for quite some time. Moreover, finding things that matter serves a necessary function to show that there is more to life than an eating disorder.

The path is long, usually years long, but it is not a march to an endpoint. It’s a journey that steers life in a new direction, opens up ways to see oneself and the world that were unthinkable before and makes life so different than it might have ever been.

The journey is in fact the point, not recovery itself. The eating disorder was a byproduct of the effects of life and a stopgap measure for survival. Getting well means finding a way to live that matches the true person underneath and her desire to live in the way she wants to live. Recovery is not only playing the long game. It is focusing on one’s life and not just getting by.