Written by Jennifer L. Gaudiani, MD, CEDS and originally featured on the Project Heal website. 

Illness cannot always be measured, and neither can wellness. This is one of the great medical challenges facing those with eating disorders, where often the act of measuring becomes the obsessive focus of life: how many calories/miles/pounds/steps?

Unfortunately, the Western medical system—of which I am a proud member, even while realizing its limitations—further puts the focus on measurables. In our strained system, patients can get triaged into “ok” vs. “sick” based on numbers that may have little to do with their overall suffering. No one would question that certain measurable values carry clear and present danger: an abnormal potassium level, sodium level, bicarbonate level, measure of kidney or liver function, or a very low body weight.

However, the vast majority of patients with eating disorders live within the torment of the ED voice, carrying out its demands to varying degrees in eating disorder behaviors, and never have a medical measurable that validates their illness. No number that clearly tells their medical practitioner, “This person needs more support, a higher level of care, a greater degree of attention, a family meeting, more compassion.”

It’s a tragedy. Because the ED voice is already saying, “You’re not sick. You’re fine. You’re not worthy of treatment. You have to get to ‘x’ to be really ill/accomplish our goals.” The fact that those with eating disorders are some of the smartest, hardest working, most driven people imaginable means that often they are in fact achieving and performing at high levels that to most would be incompatible with a life-threatening illness. Then medical invalidation further supports the ED voice, and people continue to suffer and be pulled further and further away from their values.

What are some of these unmeasurables I’m talking about?

Normal electrolytes: Sodium, potassium, and bicarbonate are almost always normal in pure restriction, no matter how intense. While often abnormal due to purging, electrolytes can all be completely normal, even when someone is purging a lot. Why? I have no idea. My theory is that the body has learned over time to accommodate purging behaviors and keep itself stable. (The body is an extraordinary, remarkable entity…thanks body for hanging in there despite bad treatment.)

Stable weight despite intense ED behaviors, or a “normal-appearing” body weight despite recent weight loss: In an overly weight-focused society (don’t even get me started), weight can be one of the factors that clinicians/programs/insurance focus on to an extent that really highlights the severity of weight bias in our culture. I can’t tell you how many patients have experienced dangerously unconcerned medical care because their body looks “normal” or is of a higher weight, even if they’ve lost a catastrophic amount of weight recently due to medical or eating disorder cause. The patients whose bodies don’t “look” malnourished are often ignored by the medical system. This is a grave mistake, and it misses not only medical complications that need evaluation and treatment, but also the whole human who is clearly suffering and ill and needs more help.  

Irritable bowel syndrome/pain syndromes/dysautonomia: Many patients with eating disorders are also prone to somatic manifestations of emotional suffering. That means emotions are made physical in the body. On more highly stressful days, someone could experience more intense than usual symptoms of nausea, bloating, diarrhea or constipation, back pain, lightheadedness, passing out, gastroparesis (slowed stomach emptying), and more. Issues like Positional Orthostatic Tachycardia Syndrome (POTS) are prevalent in those with eating disorders, and worsen as nutrition and self-care worsen. Guess what? None of these things show up on a lab panel or a CAT scan. The response of the medical system is usually to say, “You’re fine.” The eating disorder has a field day with that one, even as the soul wilts a little more. Or perhaps worse, “It’s all in your head.” That compounds the ever-present guilt, as the person thinks that somehow if they just wanted to be less sick, they’d have less pain. Baloney! These are all complicated medical problems with workups and solutions that are beyond the scope of this blog. However, the right thing to do is deeply validate the suffering and focus on whole-person wellness to try and reduce symptoms.

In sum, many aspects of illness are unmeasurable. This is particularly true with eating disorders. If you have an eating disorder, at any body shape or size, you’re not ok. Don’t compare yourself with your sickest day ever. Compare yourself with the you who embodies your values daily, who treats you kindly and compassionately, the one who uses food as fuel and enjoyment, without torment. The distance between eating disordered you and that you can’t be measured by any medical test…but it’s real. Keep working toward recovery. It’s worth it.