No individual diagnosed with an eating disorder presents for medical care in the same way. Some individuals may be open about their diagnosis, behaviors, symptoms, and recovery progression. While others may actively refrain from sharing any information about their eating disorder with medical providers. And still, some may not even know that the behaviors they're engaging in are a potentially life threatening eating disorder. To further complicate care and diagnosis within the medical system, everyone from physicians to phlebotomists, nurses to hospital administration, dietitians to case managers, possess varying degrees of understanding of the development and treatment of eating disorders. My hope with this series is to start the conversation on what I wish more medical providers knew about eating disorder care so that everyone has access to necessary, equitable care.
The first area that I want to touch on is the use of BMI as a medical indicator for 1) diagnosis, and 2) an indicator of severity of an eating disorder. All of the information and feedback in this post are based on my own personal experience and desires. So, to begin:
BMI Isn’t Everything
Eating disorders present in all shapes & sizes making it nearly impossible to identify the severity of an eating disorder based on an individual’s BMI or presenting body. As an eating disorder progresses metabolism changes, bodies adjust, and weight loss may slow, stop, or completely reverse. All while the individual is still actively engaged in behaviors that were previously considered dangerous. Human bodies are incredibly adaptable and life preserving; and for some patients, no matter how much damage occurs to their bodies, their size may never change.
I have heard countless stories from those who have had health concerns related to their eating disorders completely disregarded simply because of their size. For the patient who was told that ‘they certainly don’t look like they have an eating disorder,’ the patient who was allowed to engage in behaviors because they were in a larger body than their peers and ‘their health wasn’t a risk,’ and for the patient who was completely denied care ‘because their BMI was normal,’ I see you, I am so sorry, AND you deserve better.
For a long time these stories were just that, stories. I live in a straight sized body[1] and have historically received all necessary healthcare without having to justify my weight, size, or BMI. That changed during a brief lapse in recovery in which I presented to my primary doctor with medical symptoms indicating the need for hospitalization for medical stabilization and monitoring for refeeding syndrome. Due to the high level of patients [thank you to all of our healthcare workers] I was admitted through the Emergency Department where I was repeatedly asked to explain that I was in recovery from an eating disorder, why the admit had been recommended, and to justify my symptomatology. After hours of this, I myself began to question whether my symptoms were significant, whether the eating disorder was really impacting my body, and whether I was actually sick enough to require the recommended level of care.
These feelings were compounded upon meeting the hospitalist responsible for my care. This individual indicated that because of my BMI [in comparison to my personal growth history] there was no way that I had received the correct diagnosis and there was no need for hospitalization due to my limited risk for refeeding syndrome. At first, I was in shock. My admission was recommended by a doctor who knows my personal history (very well) and has an extensive understanding of my body’s response to the eating disorder and the recovery process. I presented with a medical need indicating that my general wellbeing was at risk; however, because of my current weight and BMI I was determined safe, medically stable, and fit for discharge.
That shock turned to anger as I realized two things. This was the first time in my life I had been denied medical care because of my size. And as much as that stung, I [recognizing that I still go through life experiencing thin privilege] could not imagine having to justify my need for care every time I sought medical care or the potential pain, anger, and frustration that individuals with eating disorders living in larger bodies face by simply asking for medical care in a system that places so much value on BMI.
I was hurt, but with my knowledge of the treatment of eating disorders and the medical risk in the refeeding process, I also no longer felt safe with this doctor’s ability to provide medically informed care. My BMI was the sole variable that was being utilized to determine the level of risk for refeeding syndrome when the National Institute for Health and Clinical Excellence (NICE) has published two sets of criteria for identifying patients at heightened risk for this complication for reasons beyond BMI alone.
Patients at the highest risk for refeeding syndrome meet one or more of the following criteria:
● Body mass index (BMI) under 16;
● Weight loss of more than 15 percent of his or her body weight in the past 3 to 6 months;
● Little to no food for the past 10 or more consecutive days; or
● A blood test that reveals low levels of phosphorus, potassium or magnesium.
Patients with anorexia nervosa or ARFID may also have significant risk for refeeding syndrome if they meet two or more of the following criteria:
● BMI under 18.5;
● Weight loss of more than 10 percent of his or her body weight in the past 3 to 6 months;
● Little to no food for the past 5 or more consecutive days; or
● A history of alcoholism or misuse of certain drugs, such as insulin, chemotherapy drugs, diuretics or antacids. [2]
I wish I could say that I used this anger to share these facts, to find my voice, to use this as a learning opportunity. and to advocate for myself and everyone who has been denied the care that they are deserving of, Instead I reached out to my doctor, hoping that their opinion would be taken more seriously [as a colleague] to provide a basic knowledge of how to proceed with my treatment. And it worked. I stayed and I got the care that I needed, but I also became aware of the lack of training and awareness of eating disorders within the medical field in addition to the importance of having a primary care provider who is well informed on the treatment of eating disorders.
Doctors need to acknowledge when there is a lack of expertise in a field and utilize resources when they are available; because patients need to be able to develop a sense of trust with medical providers to openly share their experience without fear of judgment or denial of their diagnosis. And BMI needs to be discussed as a medical barrier to receiving care far beyond the treatment of eating disorders. If you are a medical provider reading this, please take this as an opportunity to consider how you approach weight, diet, and exercise with your patients. If someone comes to you with an openness and vulnerability seeking treatment for what they believe to be an eating disorder, please believe them. Please look beyond BMI, body shape, or size and truly listen to what your patients are experiencing-because eating disorders present in all shapes and sizes.
[1] Straight Size Body refers to bodies that wear sizes small through large or 0-14 in women’s clothing. These are the sizes that can easily and typically be found in most clothing/stores.
[2] Anorexia refeeding syndrome symptoms & warning signs. ACUTE. (2021, February 25). Retrieved October 23, 2022, from https://www.acute.org/resource/refeeding-syndrome-signs-symptoms