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.

Permission to Eat, Eating Disorder Recovery..

Answer this question honestly, do you ALWAYS, without fault give YOURSELF full permission to eat exactly what you want, when you want?

If you are some one like myself recovering from an eating disorder it is an essential skill we must master.

For a person who has never endured an eating disorder, you have still been subject to the messages from society that eating xyz is bad, eating after x o’clock is unhealthy. It’s all bollocks but it’s been ingrained into us and so I reckon if you really answered this question truthfully the answer would be no, for the majority.

What does permission mean in eating disorder recovery?

There were times/ are times where I have required external permission to eat. Questions like, is it okay to eat XYZ, is this too much, are you sure I need to eat XYZ? These are all utterances that have left my lips. Obviously, like any human being, I do actually know the answers to these questions. But giving myself that permission to eat is something the eating disorder makes very difficult. The eating disorder tells us there are many things we cannot/ should not do. Permission to eat intuitively, unconditionally is not something the ED permits.

This is something we have to master for ourselves.

There were times early in recovery, where I just couldn’t give myself that permission. At this point, I think it’s often helpful to have support, where permission can be granted, whether it’s from friends, family, therapists, dieticians or coaches, until you are strong enough to start permitting yourself. Ultimately that is the goal. Full unconditional self permission. It doesn’t happen over night. I have given myself permission slips before. If I couldn’t do it mentally then having a permission slip physically was helpful.

Intuitive eating is the goal, but it’s not something we can just start doing. Particularly in early recovery, when you are re-kindling hunger cues, trying to restore weight because realistically left to our own devices in this phase we would likely not eat enough. My ED would not allow me permission to eat more than I intuitively felt in early recovery. This is where external permission was really helpful until I could do this. I would set an alarm every 3 hours, my snacks, meals all non negotiable. Until I started getting hunger signals and cravings.

Even now, there are occasions where if I’m having a stressful time where this self permission can be difficult. I can walk through the process in my mind but then following through is the issue. So permission slips or external permission can be helpful.

The following are some common permission pitfalls/ situations I’ve come across- I don’t think they just apply to eating disorders but I do believe they are very important for us not to fall into.

1. I ate a lot of food already/ I ate so much for dinner I can’t possibly be hungry or eat now. If you are hungry you are hungry. What you ate before is old news and irrelevant. Your ED won’t like it, but so what.

2. I haven’t exercised. You do not need to move to eat.

3. I’m not hungry now so I’ll just have a little bit. Then 30 minutes later or just before bed you’re hungry. It’s normal. Respond. You’re bodies not on a timer.

4. It’s after X O’clock I can’t eat now because “it’s unhealthy”….Your body does not tell the time, it doesn’t work to a schedule, this is a diet industry myth that is not substantiated by evidence.

5. But I’m going out for dinner in an hour so I’ll wait. Nope if you’re hungry, you’re hungry.

6. No one else around me is eating but I’m hungry. This is a tough one for those of us in ED recovery. Eating in front of others can be challenging as can eating when no one else is. But YOU have to be able to give yourself permission to eat whenever, wherever.

7. You don’t know what the nutritional value of something. (You don’t need to). Your body is not a calculator, again this comes from diet culture.

8. You gained weight. Giving yourself permission to eat when you have gained weight- whether you’re in recovery from an eating disorder or just rejecting diet culture is courageous.

9. Don’t feel hungry. Eating when you don’t feel hungry but are not sure when you will next eat etc is smart eating. In ED recovery there will be times where you don’t feel hungry as your hunger signals are not working. Eating mechanically here is important, giving yourself to eat even when you’re not hungry is essential. Set an alarm, reminder if you have to.

10. Eating when other’s around you are dieting. Giving yourself permission to eat unconditionally- this is definitely a hard one. With or without disordered eating.

11. Permission to eat, just because. Because it’s nice- something our weird ED brains can have a hard time with. My brain often questions why. There does not have to be a reason.

12. When you don’t feel you deserve to eat. Food has no moral value. You always deserve to eat. Find that permission.

You always have full permission to eat what you want, whenever you want no matter what. We all need to be able to grant ourselves unconditional permission.

Identifying Core Values, in Eating Disorder Recovery

Finding life/ meaning beyond an eating disorder

Recovery involves a great deal of self exploration and a deep development of self -awareness, a level that most people will not their entire lives. This is something to be grateful for.

When I first started treatment for anorexia, I remember my therapist drawing out two pie charts. She asked me to fill in the blank circles with what was important to me in life and as a person. Her point was to show me how warped our thinking becomes when we are living with an eating disorder.

My pie at the time is a world apart from the one I would draw today.

The original pie was occupied by over valued pre-occupations with food, fear of weight gain and then tiny snippets of other aspects such as family, friends, career, “hobbies’ (at the time it was labelled as hobbies rather than individual interests because I didn’t have many besides controlling my food and shape) now this would include things like, creativity, art, writing, yoga, running, being outdoors, travelling, my veggie patch, puzzles, learning and discovery. My point being it’s a lot bigger and I have reconnected with individual interests and no longer struggle to think of what my “hobbies” actually are. Recovery involves increasing self awareness and discovery.

I wrote a blog on “you are not your eating disorder” some months back. Whilst I still believe this to be true, it is somewhat simplified because much of our identity is unveiled to us as we move through recovery.

When I was first asked, “what are your values?’, by my therapist I had the default answers, but they weren’t the core. I’d long lost touch with what they were. I suppose I identified as my eating disorder.

I had my values I would spurt as if off of a script because I felt they were what they “should be” I had my values that came from my eating disorder, but truthfully at the time I had no clue what my “true” values were.

Personally discovering and reconnecting with “my” virtues and traits has been instrumental in my recovery. There’s a sparcity in research pertaining to the use of connecting with values and eating disorder recovery but I believe for many of us it could be the missing link.

We know that eating disorders can be ego-syntonic ( we believe our actions, beliefs to be appropriate and congruent with our central personality, in contrast to ego-dystonic). Meaning many of us “value our eating disorder, see nothing wrong with it” and it helps to explain the resistance to give it up. This is where the whole rhetoric “you are not your eating disorder comes in, but to begin with we often view this as synchronous with our identity. Through the self exploration we bring the ego-syntonic values into question, essentially resulting in dissonance between the contradicting values.

I’ll use my own example, when I used to turn to restriction, I’d escape the negative emotion I was trying to avoid and feel a sense of mastery of control, in the early days anyway. All of these appeared congruent with my core values; self control, self discipline, hard working, dedicated. But the more I explored what my true values were, I could see there was an incongruence. It was bringing these values to the surface that helped me move past the ambivalence I felt towards recovery.

Some of my own values and how honing them helped motivate me in recovery..

1. Honesty and integrity. I don’t think I need to expand, I became extremely deceitful in order to protect my eating disorder. I could see that lying was causing a great power struggle. Giving myself permission to become my authentic self, learning to communicate with myself and support helped me to align with these values and realise living with anorexia was not living as my authentic self

2. Compassion, forgiveness, courage, perseverance, curiosity are some of my core values. Part of my self healing work has been to learn to set boundaries, to have an “off” switch, developing the compassion towards myself that I show others and practicing self forgiveness.

3. Solitude is important to me, I can be at home in my own company. I try and nurture this by following my morning routine where I get up slightly earlier and have 30 minutes to myself. I often use this time to journal and check-in. Expanding on this further I’m someone who needs routine to keep grounded

4. Connection is important to me, although I need time on my own, I thrive on connecting with others. My family, friends, other people in this community. This was incongruent to how I was behaving with my anorexia, I become isolated, withdrawn. I believed my behaviours were helping me connect, enabling me to control anxiety around social events for instance. However, what actually happened is I avoided the social events, I pushed people away. Highlighting the conflict of the ED value and my own.

Some food for thought…perhaps journal prompts

If you’re in a place where you are still trying to figure out your values, something I found helpful to start with, was thinking of people I admire. What is it about them that I admired?

What are some of your character traits? How do they help you or hinder you?

What are some things you believe in?

Identifying our core values helps us make decisions about the future, they shape our relationships are central to who we are. They help us to understand that when we are acting out of alignment to our core values it brings about distress and often maladaptive behaviours. This is why I truly believe connecting with our core values assists us with developing coping skills for situations and finding inner peace.

“Weigh days” in ED recovery

Your worth can never be defined by a number

Weigh day in recovery This used to instil dread and fear into me and so I want discuss this further as I’m willing to bet it’s a common experience in recovery.

I’ve already talked about my tenuous relationship with the scales. However in early recovery when we are “ nutritionally rehabilitating” the scales can be important in therapy. Weight restoration can be an integral part of ones recovery.

I was doing my usual re-reading old journal entries and so many were about “weigh days”.

For me, I used to experience extreme anxiety leading up to weigh day and then days following.

Why is “weigh day”so traumatic for someone in recovery?

People with eating disorders tend to obsess over numbers, whether it’s calories, clothes sizes, or the frigging number on the scale. The numbers torment us. We live by them, we fear them. Therefore on the days I had managed to gain weight my eating disorder voice would throw a full on wobbly, if I’d lost it would throw a full on wobbly. You cannot appease an eating disorder.

For my family the “weigh days” were important to them, they were afraid it was one of the only ways the could tell if I was “doing ok” or slipping because of the secretive nature of ED. This reinforced the anxiety as-well, the concern of feeling like a failure or the threat of more focus being placed on me. But, I had lied before, many times and so I respected the validation they needed whilst I rebuilt trust.

The “target weight” issue

I personally don’t feel that “target weights” are helpful to most of us with EDs. I completely get why health professionals use them, but I personally feel that they have the potential to perpetuate trepidation and internal judgements that exceeding that target weight is to be feared or avoided.

Realistically most of us go way over. We go over because we need to, it’s called overshoot and it’s natural. It’s your bodies way of protecting you in case another famine arises. It’s why when people continually diet end up heavier because their bodies no longer trust them. However eventually when you let go of the diet BS, your body figures it’s shit out. But try rationalizing that with someone fighting an ED voice and going against an entire society who shares the ideology weight gain is a negative.

I believe holding on to my target weight kept me stuck, every time I got close to I’d bail on my recovery efforts, if I surpassed this arbitrary number I slipped. Until I let go of weighing and ate unrestricted. For some I imagine having a rough idea of a target may help them but for many like myself it can be a sticking point.

I know that, eating disorders love to hold on to numbers, to manipulate our thoughts and behaviors. Mine convinced me I needed to know my weight in early recovery to “monitor progress to “check”. Let’s cut through the crap, my eating disorder wanted to know the number as a “form of control” to ensure I wasn’t “gaining too much, too fast” it colluded with the numbers and therefore my behavior. This was continual until I was willing to accept my motives to know the number was not healthy.

Additionally certain values held specific connotations to previous relapses, or behaviors. For example the “target weight” hurdle was a huge trigger. I found it almost impossible to reach or pass when I knew the value because my eating disorder voice would get so much louder.

Recovery is hard enough, why make it harder for yourself by observing the scales? If you follow the recovery process, eating enough, not engaging in behaviors your body will recover and reach its natural weight without your eating disorder trying to complicate/ control things along the way.

For a while, I couldn’t know my weight, or (when agreed with my therapist) we reduced the weigh days.

There are pros and cons to this. Weight provides teams with anthropological information about recovery.

Regardless of whether it’s vital you are weighed you do not need to know your weight, you have the right when you attend a medical appointment to be blind weighed.

Fast forward to now, I’ve been in recovery for a while, there are days where I feel a draw to the scales. I know it’s never about the scale and I return to my recovery tool box to find what I need. I do not weigh myself. If I have to be weighed I would like to think it would cause little more than an internal stir.

If I have the situation where I have to be weighed:

I will likely follow my own healthy voice’s advice and ask for the number not to be made known to myself. Because, weight has no value to who we are. We do not need to know. It’s not worth giving the unhealthy part of my brain ammunition.

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: