Eating disorders, Stigma and Labelling..

Stigma has many definitions and layers.

But from my A-level psychology days the works of a psychologist Goffman defined it as an attribute that is “deeply discrediting’and reduces the bearer from “whole, to a tainted version” of themselves. Though much of his theory has been disputed most still accept this part of the definition.Goffman definition

“n. Stigma; the negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency. A stigma implies social disapproval and can lead unfairly to discrimination against and exclusion of the individual’. Definition

Stigma is not a new concept, dating back to Ancient Greek and Latin, where it’s common meaning “a mark, or “sign of” as well as ‘to brand undesirable”, hence the origin of the word.

Labelling has been an area of great debate for decades. Various psychologists and sociologists have attempted to argue in favour of labelling and it’s impact upon stigma or refute it. Each arguing different consequences of labelling.

Regardless, one thing I have witnessed as someone with an eating disorder is a fear of attaching a label and the stigma associated with it. The reason I am writing this was prompted by a discussion with someone within the ED recovery community this week. They themselves were struggling with the label they had just been given at diagnosis. I recall vividly feeling this way, it served as a barrier to me seeking help.

It reminded me of my very first appointment with my then therapist. After completing the EDE-Q questionnaire and the weigh in, she said with conviction “You have anorexia nervosa”

I remember practically begging her to not attach “the label”, it meant everything to me, to not have this “blemish the tarnish” on my record. It felt dirty, shameful. Even though, I had know myself, in the moments free of the anasognosia I had had Anorexia for many years but NO one had formally named it, labelled it, discriminated against me for it. Suddenly this would be the first thing doctors saw on my record. It mattered.

This fear appears to be a common amongst many fellow eating disorder sufferers. I expect, though I cannot blanketly say so, for many other mental health issues.

Labelling has been attached to concepts including, self-fulfilling prophecy, stereotyping and stigma. Suggesting close interconnection. Labelling theory broadly states people behave or identify in ways that society or people have labelled them. This can also work on a societal level that people develop stereotypes attached to a label and expect specific behavioural patterns attached to those with a label. This can have positive or negative consequences.

Lending itself to the self-fufilling prophecy whereby an expectation results in fulfillment of embodying the label.

As these roles tend to be “deviant” from the societal norm stigmas can develop. These are derived from negative stereotypes and thus resulting prejudices and discrimination result.

The structure of stigma can then be further categorised into self stigma, label avoidance, public stigma, social and structural stigmas: ( this is by no way comprehensive and just my simpleton understanding). For this post I’m focussing on stigma within mental health.

There’s a breadth of information available pertaining to the many types, mechanisms and structures of stigma.

1. Self stigma: Self stigma impacts upon how you see yourself and your interpersonal relationships. Self stigma can be a barrier in recovery, in seeking help. It can distort perceptions of how you believe other people view you. An example in the case of anorexia might be: “ I am not worthy of help, seeking help makes me weak” self prejudices– “having an eating disorder is my fault, Why would anyone want to employ me, be friends with me”. Self-stigma and resulting discrimination: self-imposed isolation, the person cuts off from world and opportunities, including help)

2. Label avoidance: An individual may be aware of stigma surrounding a particular diagnosis and thus engages in behaviours to avoid the label. With respect to eating disorders this might look like: “having a diagnosis will mean I am vain, or I chose this “lifestyle” so they avoid seeing a heath professional. Prejudices that result- ‘I am ashamed to have an eating disorder, to be seen as someone with anorexia’. Discrimination: Concealing the “label” from my family or employer and therefore not being able to attend important appointments, because I am afraid I will lose respect and my career. The best way to combat this is through finding your voice, self-disclosure. This may be through sharing your diagnosis with a small circle or friends, family or being open to talking more broadly. (This is very personal)

3. Public stigma: Where general beliefs and prejudices are affirmed to a marginalised group ultimately leading to discrimination towards them. ‘People with eating disorders are vain, People choose to have eating disorders’. Prejudices may manifest as; employers are worried to employ the person, as they may fear their mental health makes them unreliable. Discrimination may result in a person not being employed.

4. Societal/ Structural stigma: this refers to policies invoked by large organisations or systems such as governments, health facilities that lay down restrictions on opportunities and rights of those with mental illness. An excellent example of this is weight stigma. The DSM-V label of atypical anorexia. Where this diagnosis is exactly the same in terms of criteria as anorexia with one difference the sufferer is not of a low BMI. The prejudice- fat people cannot experience as severe symptoms or implications as those who are underweight. Which is not the case. The discrimination that may result; many people living in larger bodies are denied access to health care or resources because of their size. This is a big one. Structural stigma is the one that affects marginalised communities. It’s interconnected to societal stigma. How we address this is through education, challenging the narrative. But it takes time.

There are MANY types of stigma and I have barely touched the surface. My aim was merely to shed light on how public, structural and self stigma are closely interlinked and can serve as a barrier to those with mental health problems from seeking help. Understanding the origins of stigma means we can continue to break down the cross links within it. My hope is that one day, no one will fear seeking help or a diagnosis because the label will not hold power.

Fat bias

When I started this blog, I had simple objectives. First of all I wanted to share my lived experience of recovering from anorexia nervosa. Blogs were a really instrumental source in my own recovery. Secondly I wanted to debunk myths and stigma attached to eating disorders, especially from a perspective of someone working within the healthcare profession. However as time has gone on, I still have these intentions, but I also wish to be a voice in the health at every size movement. It has become increasingly apparent how much fat bias exists within healthcare. Now I am more aware of it than ever, I do not intend to be quiet about weight stigma.

People are being harmed every day by weight stigma. The issue here is, weight stigma is not widely recognised yet. How can something change when it’s not recognised as a problem? We keep talking about it.

We aren’t even taking steps to reduce it within healthcare, because we don’t know it exists, even amongst ourselves.

Just yesterday a fellow doctor posted a question on social media asking for weight loss advice for her and her partner. The doctor went on to describe all the various diets both she and her partner had tried over the years. Further more she described her thin privilege but then “menopause occurred and I gained an unacceptable amount of weight”. Most of the responses to the post disappointingly were encouraging various other diets, only one of my colleagues responded encouraging her to explore HAES, discouraging dieting.

If those of us working within healthcare have such implicit biases, how can we expect to provide non discriminatory care to “fat patients”? I do not use the term obese as obese implies pathology, it’s a medical label for “fat” and fat is not a disorder or pathological problem in isolation. It’s a deep seated belief that has infected our entire society that fat is directly related to health. Though correlations can be present in certain conditions, it is not causation and not the sole indication of health. I repeat, correlation does not equate to causation.

I would be very hesitant to receive eating disorder treatment from a provider who was not health at every size aligned. I believe biases here potentially harm our recovery, comments such as, “we won’t let you get fat in recovery” this to me should be a red flag. You might get fat, if you are supposed to, if your body needs to and so harmful statements like this perpetuates the fear of weight gain and does not address the core beliefs that need to be rewired.

We need to be shifting the rhetoric of weight = health. If we move away from this paradigm healthcare becomes a lot more accessible and non discriminatory.

Why does it matter?

One of the fundamental lessons from medical school is to provide holistic care, individualised to every patient. Doing no harm to our patients. Yet, we try to treat every “fat person” like they are one person. There is a lack of individualised care. We are not providing holistic care when we have a “one size fits all approach” as long as that size fits within a certain range on the BMI chart. This in itself causes harm and is not practicing the fundamental principle “do no harm”. Patients do not receive the appropriate treatments to many conditions because of weight stigma, whether it is surgical procedures, access to eating disorder treatment it’s all discrimination.

What can we do?

Educate ourselves. If this is the first time you have even heard the concept of health at every size, or weight stigma I encourage you to check out some of the links below.

Leave weight out of the picture, not every patient needs to be weighed every visit, consider if it’s necessary. Ask if the patient wants to know the number before you do it, some people prefer or need this to be blind.

Address your own implicit anti fat bias.

Learn about the negative consequences of dieting.

Everyone has the right to weight inclusive care. I just want to say now, these are my own views and opinions. I’m a doctor sick and tired of hearing weight loss is the answer. I have had to work on my own biases in eating disorder recovery. I am fully aware many will not agree with my opinions, colleagues, peers and friends included and this is intended as a conversation starter.

Resources:

There are somethings in life we are never meant to control. Nor should we..

Some things are not supposed to be controlled. They are not our personal responsibility. Weight is one of them. I repeat, your weight is not your personal responsibility or choice.

This may sound controversial because we have been taught that our weight is inversely correlated with health. But this is oversimplified and largely untrue.

We cannot “healthily” manipulate what’s not supposed to be manipulated.

Your weight, much like your height or eye color is predetermined, by genetics. But it’s influenced by environment, your health, your diet history, & both diet and exercise. The latter two are only small contributors. With all the other factors that you have no influence over, it’s futile trying to micromanage. If you go too far in one direction, your body will fight it to live in homeostasis.
If you are genetically built to live in a larger body you will never have a “healthy” smaller body regardless of all the exercise or dieting you do. It just won’t work, the body will fight it and you will see all of the negative effects of this.
The larger body you were born into was healthy.

What’s prompted this post is following announcements from the UK governement they may financially reward weight loss in a campaign to “fight obesity”. They talk about providing incentives with subscriptions to restrictive diets such as weight watchers and slimmers world. This is such a harmful campaign. Further more, this announcement was released in the middle of national eating disorder awareness week, the theme of this was Binge Eating Disorder (BED) (1). Binge eating disorder sufferers are already statistically less likely to seek help than any other eating disorder, despite it being the most prevalent eating disorder. 1 in 50 people in the UK are expected to be affected by BED. A staggering 40% of people in the US following weight loss programmes meet the criteria for BED (2). BED is a serious mental disorder with physical side effects. People with BED, consume large quantities of food quickly without feeling in control, it is NOT the same as “over indulging”. Patients often restrict heavily between binges which fuels the cycle. Often patients with BED do live in larger bodies, they are “obese” by societies definition. The UK government’s message is damaging and harmful to those with BED. Weight stigma is a huge problem in society and in healthcare. Patients with BED are stigmatised, invalidated and often do not seek help. They are too commonly prescribed restrictive diets as an answer. However evidence has proven time after time, binges follow restriction.

Campaigns like this, will have a ripple effect, making access to treatment all the more difficult. More patients are likely to develop eating disorders such as BED, following restrictive diets will not end well.

I anticipate- the “obesity crisis” will increase after everyone regains the weight they lose and more, furthermore it is encouraging disordered eating, which will raise the incidences of eating disorders. Without tackling the core issue of weight stigma, many of those eating disorders will go undetected. “Atypical anorexia” is another diagnosis used by the DSM-V ( diagnostic, statistic manual psychiatric disorders) to diagnose patients with anorexia but are not underweight according to BMI. However Anorexia can manifest in any body shape or size. The difference is the weight stigma those suffering with anorexia in a larger body experience. They are often congratulated for their disordered behaviours, not taken seriously making access to help more difficult.

Let’s discuss BMI. The BMI was invented by a Belgian mathematician in the early 19th century. Lambert Adolfe Quetelet was a mathematician, statistician, sociologist with an interest in anthropometric sciences (3). Anthropometric study is essentially is body measurement study. He had no medical training. He has since been heavily criticised for his population studies of BIPOC and labelling people of colour as “separate species”. One of Quetelet’s areas of interest was in the “average man”, he used data including height and weights to help him determine this.
His studies were largely population based, cohort studies, mostly including white European males. He developed a formula to calculate a ratio of body weight to height squared, after an observation that there were weight and height variations within populations. More specifically that weight did not appear to be directly proportional to height, he discovered weight varied in proportion to height squared. This became known as the Quetelet index, before Ancel Keys renamed it the BMI in 1972. Ancel keys a famous physiologist, attempted to prove correlation with obesity, BMI and poor health. He did not succeed.
The BMI was not used to determine health it was to show “population averages”. It was designed to track population’s weights. It did not measure adipose tissue, or account for muscle. Once again it primarily referenced white European men.

It can therefore not be used as a predictor of individual health status, at best it’s a population screening tool, particularly if that population is white, male and European.
It identifies potential “population risk” of certain diseases such as diabetes, coronary artery disease. However an individual’s BMI, in isolation is not helpful, as a person can have a high BMI but very little visceral fat which has been associated as a greater risk factor. Muscle mass contributes significantly to weight and therefore BMI.

Interestingly, the optimal BMI for mortality is actually within the “overweight” category on the BMI scale. The most optimal BMI statistically from latest studies is actually 27 (4). Yet the BMI scale has not been updated to reflect the definition or risk stratification. Go figure.

The more I learn the less I know, but the more I want to know. Nutritional science is an incredibly complex field of science. It’s also a very difficult area to interpret. I am relatively confident in my ability of interpreting scientific papers coming from an oncology background, but I do not feel equipped to interpret and advise patients on nutritional science. The studies I tend to go to as my default for information and decision making in my career comes form the “gold standard” of evidence, which is data from meta-analysis of randomised control trials.

Meta-analysis analyses data from big randomised trials. (For anyone non medical or non scientific, randomised control trials (RCT) are the holy grail of investigating an intervention. It involves studying two groups, randomised to receive the intervention or a placebo. The difference in the two groups is studied. For example a group of patients with diabetes are randomised to receive a new blood sugar lowering drug. One group gets the drug, the other does not. The changes in their blood sugars are observed. You can control for variables because people are selected based upon specific characteristics, such as age, starting blood sugar levels for example.

Nutritional science is difficult to interpret, because, the studies are largely cohort studies (population based), i.e. you cannot ethically conduct randomised control trials in this field (i.e. you couldn’t restrict a particular nutrient from a group). You cannot control the variables that vary like you can in an RCT (you have no idea how much carbohydrate someone eats compared to the next or how their body actually uses it). Interpreting them is difficult. Therefore I feel uncomfortable ever promoting something I have little or no understanding in. Examples that have come from nutritional science are: the “carbs are bad”, high fibre diet and colorectal cancer risk reduction, ketogenic diet, vitamin E and reduced risk of developing alzheimers. But, unlike medical studies, we cannot control variables in the studies and then apply them to individuals or draw cause and effect. Vitamin E, has been shown to reduce the risk of Alzheimers, but when you look at how, it is not actually understood. Therefore taking a supplement that is not that same as the vitamin E absorbed from a persons diet is just not generalisable.

At medical school we get minimal training on nutrition, yet we are asked important questions that I feel we are ill equipped to provide. I find it concerning when people advocate things such as low carb diets as a one size fits all, pun intended. It’s an issue, there are so many shades of grey. However I am confident in my knowledge and the evidence surrounding BMI, and weight bias. Weight bias is dangerous and our lack of understanding or inappropriate use of nutritional science is concerning. Nutrition is also a luxury and we do not acknowledge this. I am a white middle class female, I acknowledge my privilege, what this means is I am fortunate to be able to choose what I eat. Many people are not as fortunate and they eat what they can, therefore prescriptive diets by nature are also not available to a large population, and yet they are stigmatised for choices that are actually not really a choice.

The BMI was never intended to be used as the measure of individual health, that is is used for today. It is also not applicable to a wider population as it included a narrow cohort. Yet we base such importance on a number that never had any intention for medical use.

For anyone who has received weight stigma or bias, please understand you are not alone. Binge eating disorder is serious and everyone should be able to access help. We can be healthy at any size.

References:
  1. BEAT Eating disorder Awareness Week: https://www.beateatingdisorders.org.uk/edaw
  2. BEAT information page BED: https://www.beateatingdisorders.org.uk/types/binge-eating-disorder
  3. Quetelet index: https://pubmed.ncbi.nlm.nih.gov/17890752/
  4. BMI associations and mortality: Change in Body Mass Index Associated With Lowest Mortality in Denmark, 1976-2013 Afzal, S., Tybjærg-Hansen, A., Jensen, G. and Nordestgaard, B., 2021. Change in Body Mass Index Associated With Lowest Mortality in Denmark, 1976-2013. https://jamanetwork.com/journals/jama/fullarticle/2520627?resultClick=1