This week was Eating Disorder Awareness Week (EDAW) here in the UK and the thing that has stayed with me the most is just how much a weight-centric eating disorder support community is a barrier for treatment, particularly with anorexia. Whether someone is accepted for treatment, or turned away, is still largely dominated by weight, and this post explores how and why this is so problematic.
Heads up, some of this might be triggering, especially if you have anorexia. I trust you to do what you need to do to stay safe.
Weight should not have a place in how we allocate treatment resources to eating disorder sufferers. The latest version of Diagnostic and Statistical Manual for Mental Disorders (DSM), DSM-V, removed specific weight requirements from their diagnostic criteria for anorexia. However, it continues to hold that a 'significant low weight' is a defining feature of the disorder. Sadly, Body Mass Index (BMI) -- weight in kg divided by height in m2-- requirements still exist for many eating disorder treatment programs. This means that people who are genuinely struggling get turned away because of their weight. This is problematic for SO many reasons -- and buckle up because we're in for a long ride here.
Why weight shouldn't be a determining factor for treatment allocation
Firstly, BMI was never designed to be a measure of individual health. It was designed by a statistician who was looking to gain an idea of weight trends in the population. It was also designed to measure male bodies, not women. It was debunked years ago because it doesn't accurately reflect other important measures of health such as: muscle mass, bone density, blood volume, water etc. And yet it continues to be widely used to determine whether someone has anorexia or 'ob**ty'. To put this in to perspective, the famous NFL quarterback Tom Brady would be considered 'ob*se' according to the BMI charts. ( I will spare you a tangent on why the medicalisation of higher weight is twisted...you're welcome ).
Secondly, a focus on particular weight criteria leads to people being turned away from the treatment that they desperately need and deserve. Now, I get that eating disorder services, much like most mental health services, are underfunded, understaffed, and overworked so I appreciate that these criteria provide a framework for allocating space resources. So I'm in no way pointing the blame at individual practitioners, but rather highlighting the fact that the system is broken and failing. Because as soon as we turn someone away for treatment because they don't meet the weight criteria it implies that they are not sick 'enough'. To a brain riddled with an eating disorder this communicates that they're not 'thin enough' to deserve support. This can, and often does, have devastating consequences by amplifying dangerous eating disorder behaviour.
Thirdly, anorexia doesn't always result in extreme weight loss or in becoming 'underweight'. This is something that's half heartedly addressed in the DSM-V through the classification of "atypical anorexia" -- which is where people typically get looped in when they meet diagnostic criteria for anorexia but aren't considered 'low weight'.
A 2017 study found that 25% of participants who received a diagnosis of 'atypical anorexia' were within the 'normal', 'overweight' or 'ob*se' BMI categories which illustrates the need to screen for restrictive eating disorders in all body shapes ( Forney et al., 2017).
Have you ever looked up the definition of 'atypical' in a dictionary? I'll save you some time:
"not representative of a type, group, or class"
"not typical, irregular, unusual"
"abnormal"
How would you feel if you mustered up the courage to go see a healthcare professional and tell them you think you're struggling with an eating disorder, and they tell you you've got 'abnormal' anorexia? Given that anorexia is often accompanied by perfectionism, obsessive thoughts, a preoccupation with weight loss, anxiety, depression, low self-worth, low self-esteem, body dissatisfaction, and feeling 'not good enough', it's easy to imagine how this can be an absolute disaster.
The reality is that a starved body results in a starved mind. As someone continues to restrict their energy intake their brain function diminishes. Their capacity for higher level cognitive thinking becomes impaired as the brain goes in to 'survival mode'. When our body and brain believe us to be in danger they release cortisol and adrenaline to help give us a boost of energy that can hopefully power us through the dangerous situation. Energy gets reallocated from 'non necessary' brain structures (like the cortex) to the brain structure that can ensure our survival (like the amygdala and brain stem). Cortisol and adrenaline get pumped through the body in an attempt to prepare for fight-flight-freeze. For someone with anorexia, this can leave them feeling numb and disconnected from their bodily cues. In other words, they stop feeling the painful sensations of extreme hunger. They barely register the fatigue and pain that accompanies energy deficit. Their bodies and minds are too preoccupied with trying to preserve precious energy and fight for survival to stop and reflect rationally on what it means to be given an 'atypical anorexia' diagnosis. They struggle to contextualise a buckling mental health system as the cause of their rejection from treatment. Instead they internalise it and the eating disorder uses it to reinforce ideas and behaviours that serve it. It is, after all, a mental illness.
This brings me to my fourth point, which is that the damage caused by an illness like anorexia isn't simply the result of low weight. Low weight is *sometimes* a symptom of extreme energy deficit, but it's the energy deficit itself that causes strain and stress on the body and mind. I'm not in any way saying that being at a dangerously low weight isn't problematic, but I do believe that it's important to distinguish that extreme energy deficit is what makes anorexia deadly.
Jennifer Gaudiani, a medical doctor that specialises in working with eating disorders, explains what happens to the body when it experience extreme energy deficit in her book 'Sick Enough'. She describes how when we are in energy deficit, our bodies automatically make changes to the way we function in order to conserve precious energy. They will switch 'on' certain functions that can help with this and switch 'off' others that use unnecessary energy for basic survival. Temperature regulation shifts, and since fingers and toes aren't necessary for our survival they receive reduced blood flow and can turn a blueish red colour. Blood pressure can drop and blood flow through the body can slow down in an effort to conserve energy. Blood volume can become depleted due to dehydration, putting dangerous pressure on the heart. Heart rate slows down, contributing to a low pulse. This can lead to dizziness and fainting upon standing up. These fluctuations to heart rate can damage the heart muscles and lead to things like bradycardia and heard failure.
The stress of energy deficit can decrease immunity, increasing susceptibility to infections and viruses.
Slowing down digestion is a way of conserving energy, but this can lead to constipation and a condition which is known as gastroparesis - which is when the stomach muscles stop pushing food down in to the small intestine. This can result in feelings of fullness after a small amount of food but it can also lead to dangerous intestinal blockages that can cause infection, sepsis, and sometimes death.
Persistently low blood sugar from lack of food can cause seizures.
When we starve our bodies we also starve our minds. Our brain requires around 20% of our energy (mostly derived from carbs). When we aren't getting enough energy parts of our brain shut down. Increased anxiety, depression, self-harm, and obsessive thinking also accompany energy deficit. This is likely due to the fact that our stomach and digestive tract is our enteric brain -- fun fact, our stomach has as many neural connections as a cat's brain. When we screw with our food intake we screw with our 'second brain' ( our stomach ) which alters the production of important neurotransmitters like serotonin which are important for our mental wellbeing. This is one of the reasons why suicidal ideation is a common symptom of anorexia.
And finally, reproduction isn't necessary for our survival so the production of certain hormones is switched 'off' to preserve energy. Low sex drive, loss of sexual function, and amenorrhea (loss of periods) are common symptoms of long term energy deficit. If we aren't producing certain hormones this can lead to loss of bone density and increase the chances of developing osteopenia or osteoporosis which have painful long term consequences.
A focus on weight for determining access to treatment for anorexia is hugely problematic because it ignores these factors. What's worse is that when paired with the fat phobia and weight stigma that's been deeply engrained in the healthcare system, some people with eating disorders are leaving their doctors office with a thumbs up for their weight loss efforts or, worse, a prescription for a diet or weight loss surgery. This is NOT ok and it desperately needs to change.
The bottom line is that restrictive eating disorders are dangerous and they don't always lead to significant weight loss or a 'low' weight or BMI. And it's time that we start taking this seriously so that everybody can get the care and support they deserve.
References:
Forney, J.K. et al. (2017) "Defining 'significant weight loss' in atypical anorexia". International Journal of Eating Disorders.
Gaudiani, J. (2018) "Sick Enough: A guide to the medical complications of eating disorders".