Orthorexia- the “socially acceptable” eating disorder
My eating disorder like many, has been a shape shifter over the years, meaning at various times I would have met criteria for more than one diagnosis besides anorexia nervosa.
We are all human beings. Fitting into criteria or a neat little box isn’t congruent with being human. And so whilst diagnostic criteria can be useful to help identify or guide which treatments may or may not work for you, I think that’s where their relevance ends.
What is Orthorexia?
The Diagnostic & statistical Manual of Mental Disorders (DSM-V) does not currently hold a separate diagnosis for Orthorexia. Instead it technically fits under the diagnosis Avoidant Restrictive Food Intake Disorder (ARFID) , although not perfectly, we return to my point about us being humans and not fitting neatly under one set of criteria.
This is a disorder characterized by an obsession with eating “healthily” or “clean” foods. A person becomes fixated on eating only foods they deem to be “pure”, meaning they can adopt strict rules and restrictions around foods and how they are consumed. I called it the “socially acceptable” eating disorder because it can be hard to detect in a society that praises restriction and demonizes anything else. People often reward people for eating “cleanly”. No eating disorder is ok. Orthorexia is when a persons focus on eating healthily actually becomes detrimental to their health, as a result of the obsessions, restriction, nutritional deficiencies and effect on the body.
It wasn’t until I started recovery for anorexia I realised I needed to challenge this too.
Orthorexia complicated my recovery, as I mentioned eating disorders are shape shifters, my way of “coping” with recovery became focusing on nutrition for a short while. If you are trying to recover by eating only “healthy” foods, you need to challenge this.
You cannot recover from a restrictive eating disorder holding on to ANY rules around foods. My obsession with eating healthily also preceded my development of anorexia and at some points other ED symptoms.
It is generally accepted that people experiencing orthorexia are not always driven by a fear of weight gain or drive to be thin, unlike anorexia. It can result in body dissatisfaction but weight loss it is not the driving factor (usually). It is about feeling clean and pure. I have no doubt that it could lead to anorexia in those of us with the genetic susceptibility because it can result in energy deficit.
Some of the warning signs of Orthorexia may include:
Unhealthy obsession with checking ingredients or contents of food (not driven by a fear of weight gain)
Cutting food groups because they are deemed “unhealthy”
Rigidity, not being able to eat foods not prepared by themselves or consume foods they do not know the ingredients (again not as a form of intentional energy deficit)
Distress, obsession impairing well being
If you think you have a problem, any concern with disordered eating, it is always good to seek help. Talking to a GP, a health at every size aligned dietician or therapist would be a good place to start. You deserve to have mental freedom.
But when life is challenging , you won’t have an eating disorder to contend with as well.
Rather naively, I think many of us hold this notion of “if I could just fix my ED, my life will be perfect”. So let me get in there early and save you the “aha” in months/years to come, set your expectations now, be realistic .
This is something I have come to realise throughout my recovery. The many times I’ve contemplated what recovery means, how I define it, what life will look like beyond my ED.
As I’ve gotten further into recovery and shifting away from my eating disorder, it’s become increasingly apparent that recovering from an eating disorder does not mean life will ultimately be all rainbows and flowers once the ED is conquered. No. That’s just not possible. But, life’s so much better, just putting this out there early.
But, the big thing here, the “aha” moment for me, was recognizing recovering from an eating disorder means we have tools to help us when life throws us a curve ball and returning to the eating disorder does NOT have to be an option.
Additionally when something in life happens out of our control, not having to contend with an eating disorder simultaneously, means we are better equipped to handle the stress.
An eating disorder is a big problem, not a solution. It may feel like it gives you control and comfort around times of difficulty but I promise you, that is the mask of the ED. It is definitely an added problem that you do not need.
Recovery will not mean that when you have a stressful time in your life, a loss or lots of change you won’t experience human reactions such as anxiety, low mood or whatever else we all feel according to life events. Recovery doesn’t make you some kind of super hero that doesn’t feel or get rocked by anything- but it does mean you don’t resort to dangerous/ maladaptive coping mechanisms that you have relied upon until this point. Learning to feel has been a skill I’ve developed in recovery and how to respond to these feelings.
It would be unrealistic to believe you will never have a day of insecurities, or god forbid a bad body image day. Because even people who have never experienced an eating disorder experience these human emotions. But if you’re recovered you won’t obsess over them, you will be able to deal with them and it won’t “ruin your day your week or even your year”! Yes I did just do that.
Recovery is a beautiful thing and it means something different to everyone. The recovery process is not the same for any of us, but I do believe it is important to consider your expectations of what it will mean for your life.
Personally, it has led me to an understanding that beyond ED Recovery work, in order to remain in recovery, l will need to put work into ongoing stress management, imposter syndrome and work anxiety. For me they are interlinked.
It is highly likely this will mean continuing with therapy of some kind to help me work with these issues, because I want to protect my health legacy.
One thing I know, life stressors are not something that are going away because it’s part of life, everyone has problems. BUT don’t let having an ED be one of them or believe that once you have recovered you will be a unicorn and NEVER have another issue.
When will my extreme hunger end, is my extreme hunger normal? Should I trust this hunger? How do I get rid of this extreme hunger? Why can’t I eat like a normal person? Am I mad? Are these questions you’ve asked?
You’re not alone.
Hunger is normal. Most people wouldn’t give it a second thought, they experience hunger, they eat and move on with their day. It is a normal human function.
For those of us who have been through an eating disorder or any form of disordered eating we have tried to avoid hunger. Lost touch with it, broken our trust and relationship with it.
Almost as a sick joke, when you start recovery, it is very likely you will experience the well recognised phenomenon that is hyerphagia, a.k.a ‘extreme hunger’, though not everyone does. Realistically you are unlikely to be able to go from heavy restriction to eating ‘normally’ straight away.
What is extreme hunger?
It is essentially a biological reaction to a period of restricted intake, this can be through disordered eating such as dieting or an eating disorder. It is the body’s mechanism to heal, there are physiological aspects to do with hunger hormones such as ghrelin as well as psychological mechanisms. It is a means of repaying the deficit of energy the body has undergone to repair itself. So whilst we are here, let’s emphasise that although it feels ‘excessive/extreme’ it isn’t under the circumstances is it?
When you restrict, even in short periods your body begins to utilise energy from all parts of your body. This basically means your body has started digesting its own organs etc. Now imagine if that was for a very long time, the damage done, eating normal quantities of food would be a drop in the ocean, it’s not enough.
As someone who has ignored hunger, restricted their intake of food, this feeling of intense hunger is terrifying but makes complete sense if you break it down logically. I wanted to wait a while before writing this, I wanted to write my experience from the other side to reassure you IT REALLY does get better.
Not everyone will experience it, it will look different for everyone, it may show up right from the offset of recovery, or like me later after a relapse.
I remember trawling the internet for hours, reading scientific papers, watching YouTube videos to try and predict when my ‘extreme hunger’ might subside and if it was normal asking all of the above questions, hoping for an answer.
The truth is, no one can tell you when it will happen, if it will happen or when it will go. The only thing you can be reassured in, IT IS NORMAL, IT WILL GO AWAY when your body is ready for it too. And yes, there may be times it returns, for instance if you enter a period of inadvertent restriction i.e. after a small illness.
I didn’t experience this “extreme hunger” when I first started recovery in 2019, it showed up for me when I truly let go of all restriction and got back on track from my last relapse in August 2020. It manifested in many ways which I’ll elaborate on.
When I was seeking comfort from online sources, article after article would reassure me that what I was experiencing was in fact a completely normal response mechanism to restriction and that if I honoured this hunger it WOULD dissipate. I did not believe any of this at the time. It felt so wrong, like I was doing something wrong (I was in terms of my ED brain, which is a good thing), I felt like it would never end.
But now, if you have found this by searching “will my extreme hunger ever go away, how do I get rid of extreme hunger” I promise you as someone who has come out the other side IT WILL GO AWAY if you obey and don’t judge the hunger. I know you’re probably laughing at me now, “how can I not judge this hunger, I am never going to be able to get through it” YOU WILL.
What does it feel like...
It feels like bingeing. It’s not. It is eating what you need for the deficit. The key difference is restriction and the behaviours associated such as compensation etc. Although- I personally believe BED (Binge Eating Disorder) patients are often in a difficult position- where many treatment providers inadvertently promote restriction, by trying to limit intake, which in my opinion can set the sufferers up to binge more, which makes their recovery journey difficult. But that’s just my opinion. This is why health at every size aligned treatment is so important.
Your mind and body tells you to eat ALL foods ALL the fucking time.
You’ll think you can control it, “I won’t eat as much as that tomorrow, I’ll be normal” but you won’t, you can’t win that, so settle into the discomfort.
You will likely feel full to the point of pain but hungry all at the same time. Your stomach may feel bloated because it’s not yet well rehearsed at digesting and it’s like your stomach can’t keep up with your brain. Or you’ll think your full and done only to then feel as if you haven’t eaten just 15 minutes later. This is completely normal. (I mean nothing about restricting, starving is normal, but this response to that is)
I could eat my dinner & pudding then 30 mins later repeat this and still feel un-satisfied. I felt like a bottomless pit. It was like a survival drive.
I also experienced mental hunger. Mental hunger is a form of hunger, where you are constantly thinking about food, it often occurs when we haven’t 100% connected with our physical hunger cues or satiety.
For me this included dreaming of food, often nightmares of my fear foods, thinking about what my next meal would be, worrying about what it would be, when I would eat, if it was enough/too much, if it was ok to eat XYZ, if I was hungry, am I eating out of boredom, emotions, would I like it, would it be horrible, It was probably more distressing than the physical hunger because it was relentless and totally unimportant. If you experience mental hunger, it’s hunger. It will get better with eating.
For someone who has not experienced this, it’s hard to actually express how intrusive this is. It makes thinking about ANYTHING else really hard. My rule of thumb during this time was, if I thought about it, I ate it.
THIS is highly traumatic to a person who has restricted their intake for so long. I would advise you to enlist support during this phase. Distraction can work a treat when you are eating. Watch a show that holds your attention, eat with someone you trust, take up puzzling, anything to shift focus from the anxiety of eating. (I don’t personally believe mindful eating is very helpful at this stage as it just increases anxiety and our ridiculously critical brains, mindful eating is for WAY further down the track, intuitive eating is the goal. Just not now.
Hot water bottles become your best friend as do things like peppermint tea, they help soothe some of the gastric symptoms (I.e. unbearable gas – having a pet helps for blaming purposes!).
Yoga not only helps with the anxiety side of things, it can help with the bloating.
This is not a time to be wearing things that make you uncomfortable. Wear elasticated pants, those comfy sweat pants, flowy dresses, loose clothing, nothing that makes you feel constricted.
One thing I did, which is probably really weird but it helped me, was to name my belly “Bob”. This wasn’t a particularly conscious effort. But I like to use humour for many things, my distended belly ‘Bob” became a running joke between my partner and I. When I reflect now, I can also see it made the process easier, I separated myself from ‘Bob’, which meant I could seperate myself from my ED. If ‘Bob’ was hungry it was easier to feed ‘Bob’ than it was myself. If ‘Bob’ wanted something my ED was utterly disgusted by, ‘Bob’ got what they wanted, it was ‘Bob’ not me. When Bob was bloated I could laugh and show them compassion rather than receive the barrage of abuse and contempt my ED voice would show me.
I HAVE NO IDEA if this is something that ANYONE else would do. But it worked for me and I wanted to share.
I haven’t fed ‘Bob’ for ages, I feed myself now. But when it was really difficult to do, responding to ‘Bob’ was easier. As a thirty something year old there’s nothing less de-humanising than not being able to feed yourself, and until I could, I enlisted this tool.
Will my extreme hunger ever go? Yes, when? no clue.
Eventually over months my appetite “normalised” I use this term very loosely. There’s no such thing as a ‘normal’ appetite but what I mean is I now have a pretty reasonable relationship with my hunger cues and desires. I am leaning into intuitive eating. This extreme hunger fixed itself with time. I would find it very difficult now to eat large quantities of food (outside of what I was desiring).
One thing I had to accept was, during this time and possibly for the foreseeable future my requirements are not the same as someone who has not waged war against their body. I had a lot of damage to repair, to pay back and so comparisons to your peers will NEVER be helpful. It is not a normal situation to be in, recovering from an eating disorder and so your requirements will not likely be the same as someone who has not experienced this. So leave the judgement behind. YOU do YOU, stay in your own lane. For example there have been times where I have been able to demolish double what my husband can eat, I do not believe in the “his and hers” portions. Or portion sizes full stop for that matter.
Eventually your body will start to heal, it will start to trust you and your hunger and satiety cues will return without any intervention. Just hang in there.
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.
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.
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 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.
Some days feel like you are cruising along. But I want to talk about the days where you feel exhausted by recovery itself, when motivation wavers.
I feel it’s important because without acknowledging, this “burnout” has the potential to hinder one’s recovery, through frustration, boredom or just sheer mental fatigue.
Burnout has been defined as a state of complete mental and physical exhaustion resulting from prolonged stress, where a person’s ability to meet demands is impaired. Often, through feeling overwhelmed and/or emotionally drained. Not surprising the pandemic has resulted in high levels of this and likely far more to come.
This definition is also applicable to recovery don’t you think?
When I was all consumed by my eating disorder, if I’m honest, I found every day exhausting. Living by the constraints of so many rules and behaviours made every waking minute punishing , not to mention the insomnia. Oh my god the insomnia that results from a starving brain, it’s like a waking nightmare, you’re haunted by the food “you won’t allow yourself” and all the while your brain is trying to scream at you to eat. Your brain wants you to live and in doing so constantly reminds you about food, 24/7 it doesn’t sleep and so you don’t sleep.
Life with an ED was sapping, but I didn’t appreciate this at the time, partly because I was permanently living in a high state of stress all the damn time, my body didn’t allow me to feel it. It’s the fight or flight mode, the product of an overactive sympathetic nervous system. But I was tired.
When you enter recovery your body has the chance to pause and take a breath when you finally stop. It begins to heal. Healing hurts, when you injure yourself, it’s the inflammation and body’s response to healing that’s sore.
I’m not going to sugar coat it, this moment of stopping, everything might hurt. All the injuries, the pain your body has concealed from you, just so you can “keep going” hits all at once. It’s a wall like I have never faced before and barely have words for. This fatigue and pain gets better as you feed yourself, rest & heal.
Early recovery is exhausting. There’s so much healing and adjusting to do, but the anticipation of better days ahead kind of pushes you through. You and most people around you expect tiredness in the early days, it makes sense from what your body has been through.
It’s what I’m going to discuss next that I think has been a difficult concept for me to grasp or allow myself not to become overwhelmed by.
Recovery is boring. Really fucking boring at times. Realising you will likely need to deal with recovery each day to varying degrees. Recovery still has to fit in your world. It has to so that you don’t fall into a pithole.
For example as we get further along in recovery, so many things change, mostly positive let me just get that out there now.
However…as your world starts to get bigger and your eating disorder brain is taking up far less of your mental space, you start to see who you are and what life without your ED can be. You start to have goals and dreams that are “normal” people dreams, not unrealistic eating disorder standards. You don’t want your ED to even factor in, but for a while to protect your future it has to.
You know in order to realise these aspirations you still have to have recovery goals, because how can we dream of a life without an ED if we don’t put the work in to recover?
It’s more like an irritation on these days where you are mostly free, without the constant barrage of intrusive thoughts, you have room to deal with life, “normal” thoughts & goals. Here, I try to reframe my thoughts to be grateful for these days because the alternative of not being bored, sucked.
There are days like today, when I have lots of things I am focussing on, career progress, my job in hand, family, where we will be living in a few months etc that it irks me that I have to spend any extra energy thinking about recovery. Today this meant a bit of extra attention to meal structure because I’ve lost my appetite. I can’t afford to fall into that trap and I have to focus on fueling myself properly on top of the other things. Frustrating as it is, that recovery still has to fit into that world and those future plans, it’s helpful to reframe this thought process, I am happy to inhabit a big world that my recovery has made possible.
Other times where I think recovery can become arduous is when we ruminate on the past. I often experience regret for lost time to my eating disorder. I no longer feel ashamed about it for the most part, but I do feel sad. I find this regret prevents the resentment to recovery orientated thinking/ behaviours when I’m feeling “over it” because I don’t want it to be my future as well.
This can be emotionally draining. I think it’s important to return to your self care toolkit on these days. I think becoming tired of dealing with recovery is real but I would choose to be here, rather than be a slave to it any-day. Recognising how you feel and that you can’t make massive progress EVERYDAY is ok, Burnout is ok. Be kind to yourself. Acknowledge that this is a good sign.
If you’re feeling the recovery burnout I hear you. One day you won’t have to use as much energy to protect your health legacy. So be grateful for the boredom and keep going
This post is not intended as medical advice and I am not an expert. I write this with lived experience, the intention of raising awareness and promoting self advocacy.
Have you lost your period?
Losing your period is never something that should be taken lightly, it can be a serious indicator that your body is functioning suboptimally.
What is Hypothalamic Amenorrhea?
The absence of a period for 3 or more months related to an problem with the hypothalamus. The hypothalamus is situated in the brain it connects our endocrine system to our central nervous system. It has many roles- it basically acts as a regulator for many of our bodies systems. It is the main regulator of the pituitary gland which is the where central regulating hormones are released. Some of those hormones include reproductive hormones, needed for menstruation.
Hypothalamic amenorrhea- When the control centre of the brain that regulates hormone secretion– is turned off.
Why does this happen?
There are several factors that can lead to disruption to the hypothalamic signalling. This post is focusing on the reproductive aspects- hypothalamic amenorrhea. My intention is to give a brief outline to help you understand 1.why it happens, 2. Why doctors don’t necessarily consider it when they see someone in front of them.
Factors that lead to HA:
◦ Energy deficit, this is the biggest factor and can occur due to a plethora of reasons. One of those is dieting. Whether this is through intermittent fasting- where the regular signals are not being maintained, caloric deficit, or excluding specific food groups such as cutting carbs/ fats, they all disrupt the signalling from the hypothalamus.
◦ If your hypothalamus perceives energy deficit it shuts down non vital functions of the body. It keeps you alive, it’s like a book balancer. What you don’t “need” it cuts. Menstruation is a function of reproductive health. Therefore, it is not a vital component to staying alive. Therefore it shuts off this non vital function, in order to preserve other functions including keeping your heart beating. This is another reason why we tend to feel COLD ALL the time when we are in energy deficit or have HA- the generator shuts off the heater to conserve other functions.
◦ Weight loss regardless of your size. Youcan have HA at any BMI. Firstly, If you lose weight it’s likely related to energy deficit, however when you lose weight you lose important regulating hormones (leptin) which are in fat cells and this is part of the feedback system to the hypothalamus.
◦ Stress. Something that puts stress on your body can disrupt periods. This may be through emotional or physical stress. Cortisol turns off the hypothalamus. Therefore it can cause you to lose your period.
◦ For similar reasons to above- exercise especially high intensity exercise can raise your cortisol by placing stress on your body. Additionally it can lead to energy deficit and weight loss and so it’s continues the issue. This is part of “female athlete triad”
Unfortunately HA is a common issue, however it’s not always recognized. Partly because it’s not understood and there are many misconceptions around HA. For instance people inhabiting in larger bodies are often rewarded for their weight loss efforts and exercising, but we know that HA can occur at any size. But often we are not as open with healthcare professionals about our lifestyle and they often don’t enquire.
When women lose their periods they are sometimes then commenced on the contraceptive pill to “restart” their cycle, or in some instances diagnosed with Polycystic ovarian syndrome (PCOS).
Unfortunately this is a problem because the management of PCOS- is often the complete opposite of HA. The contraceptive pill does not address the underlying issue, energy deficit. A bleed induced by the oral contraceptive pill is not a real period. If you took the pill away likely the person would not bleed.
I lost my period for a long time, thankfully I have healed from HA personally.
When in the depths of my eating disorder I did not advocate for myself or share my situation with healthcare professionals. I was advised at times to take hormones, I was not advised to stop/ reduce my exercise or eat more for instance. Getting a diagnosis is challenging because one, we don’t share and two it’s not always on the healthcare professionals radar.
However sharing knowledge with health professionals can help raise awareness.
I am no expert, I write this purely from personal experience and getting to know people within the recovery community.
I encourage anyone who has lost their period to seek medical advice, there are many reasons for this not just HA. But if you are someone who could be at risk of this you may need to advocate for yourself here.
I’ll write a separate post about some of the myths and issues associated to HA.
Journaling can be a game changer in eating disorder recovery. It has been for me.
Your journal can become one of your most powerful allies, it can become a well honed tool from your ever growing recovery toolkit. It’s versatile and you can scribble anything you like anywhere. There’s no right or wrong way to journalling. Journals can be sculpted to wherever you are at in your recovery. Journals can be used for outpouring your thoughts or completing specific activities.
If you’ve not tried the whole journaling shizzle out yet, I highly recommend you give it a go.
Journalling gives us a safe space to churn our thoughts on to the page in all their ugliness or beauty depending how you view it. Thoughts you wouldn’t otherwise exorcise.
The journal itself can be used as a recovery tool, through various journalling exercises and practices you can solidify some of the groundwork from therapy sessions etc.
Sometimes the journal can be as simple as your listening ear when your struggling with an urge. Often the time it takes to write out the thoughts and feelings around a behaviour or an urge is long enough for the urge to pass and you’ve got written evidence of what led to the feeling or thought to help you next time it occurs. Win. Win.
We often take progress we’ve made for granted, but re-reading journals can really help you see each tiny step you’ve made even when you feel like you’re stationary.
I’ve never been a “big sharer” of my thoughts or feelings (until I was well into recovery and now I write a very un-private blog with all my craziness laid bear). However journalling helped me to share some of my most shameful thoughts, fears and emotions without judgement. Part of the eating disorder problem is the inability to share, or express difficult emotions or the feeling that what we have to say is wrong etc. It’s this rhetoric that keeps us locked in. Journalling releases a lot of this and makes it easier to begin to talk outside of the pages.
Keeping a journal can help us to identify recurring themes, thought patterns, processes especially those that occur around our eating disorder “self”.
Although my eating disorder is not your eating disorder we all share some common thoughts patterns that make us similar, which is why I write this blog in the first place. If it resonates with one person I’m glad I write. I find reading about what has helped others in recovery not only inspires and motivates me it actually strengthens my recovery. I remember reading about journalling on NEDA and completing some journal prompts from the “8 Keys To Recovering from eating disorder recovery workbork” and they really helped get me started in journalling in early recovery. Now journalling is part of my daily routine. Mostly in the form of gratitude practice, but I will elaborate on gratitude later.
Once I have written the thoughts out on to page, it becomes so much easier to see them for what they are; THOUGHTS. Just because we have a thought does not make it true.
For example, an old entry of mine in June 2019:
I couldn’t make a single decision about what to eat for dinner, I stood in the kitchen for ages agonising over whether to add oil to the pan, all I could hear was how fat I’m becoming and how unhappy I will be
I reminded myself restricting has never resulted in happiness, I was not able to add the damn oil tonight, but I know I am capable of making hard choices and I will find the courage to do it”
After writing thoughts like this out on paper over and over, I began to believe my healthy voice again. Restriction doesn’t make me happy, neither does endlessly pursuing “skinny”They are just thoughts and my truth is I can be happy living an unrestricted life at any size.
My next post I’ll share some journal prompts that have helped me.
But for now, perhaps try and think about if you were to go to bed and wake up recovered ( I know I wish right?!)what would that look like, what are some of the things you would do and feel as someone without an eating disorder? How would your life be different?
Can you scribble somethings you have learned this week? What is helping you, what’s holding you back. What have you discovered about yourself?
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.
Whether you are just starting recovery or have been on the the path for some time setbacks are inevitable.
It’s okay. It doesn’t mean you can’t recover, I absolutely believe recovery is possible.
But not preparing for setbacks is setting yourself up to fall. After all perfectionism is part of the issue right?!
I am happy that I will one day consider “succeeding at anorexia” as my biggest failure. A setback or relapse does not mean you have failed at recovery.
Setbacks teach you things and pave the way for what might be ahead. They prepare you for a fulfilled life without your eating disorder.
I’m hoping my latest setback will help you.
I’m not ashamed I momentarily took my foot off the recovery pedal. It happened, I’m back in control and wiser for it.
Why did it happen?
Well if you’ve read any of my previous posts you will know I am a firm believer that eating disorders have a strong neurobiological component fueled by energy deficit. Energy deficit being the match to the flame if you like. The physical and psychological symptoms that follow being the fire that is contributed by everything else such as environment, stress etc. The important thing is the match in the genetically vulnerable.
I have just finished a set of night shifts. Night shifts to the average person without a history of an eating disorder can reap havoc on health, both physically and mentally. They disrupt your natural circadian rhythms, they can be socially isolating and routine can become difficult.
I’ve worked shifts for years. I know it’s a time where previously I have allowed my eating disorder to thrive. Therefore, armed with this knowledge I planned to avoid falling into the trap of my eating disorder.
Knowing I cannot allow myself to slip into energy deficit I made preparations to attempt to combat this. I ate more before work and before I slept, I planned out snacks to take with me.
But life happened. I missed some breaks and a few snacks. I was lacking sleep and so my appetite was lacking, I hadn’t made self care and routine a priority.
I didn’t think much of it in the craziness of the shifts, but when I found myself unable to eat 3 meals a day when I came off my shifts I knew I had slipped.
I haven’t had “fear foods” for sometime.
I haven’t thought about engaging in disordered behaviors such as concealing what I was/ or wasn’t eating, for months.
I haven’t listened to the voice tearing me to shreds in the mirror for the longest time ever.
But suddenly it was all there I was right back in it. I found myself wanting to control my intake, to compensate for every “ unhealthy” choice I was making. I recognised a familiar welcome feeling of emptiness that in truth I had actually forgotten. The emptiness euphoria made me contemplate giving up on recovery. After all if I’ve fallen so easily after so long, what’s the point in continuing? The intense draw to the scales returned, I had to fight to not give in to the temptation. I know that no number on that scale would have had any importance, but to my eating disorder it would have been used as firewood.
I danced with the temptation of a full blown relapse. However, I reminded myself it was all lies. If I didn’t put this match out I’d be amidst a wild fire that only wants to destroy.
I needed help. I needed support. I’m not ashamed of that.
My eating disorder tried to make me carry the weight of shame. But that’s another reason I knew I needed to put the match out.
I enlisted support from my support network. I chose to let them in. For the few days following, making decisions around eating felt like an impossible task. The thoughts were so loud. I have now reinforced routine, I challenged the “fear foods” that re-emerged and I prioritised taking care of myself by resting, talking and eating. Instead of pulling myself apart and focusing on “failure” I’ve chosen to treat myself with compassion.
I feel back on track. Ive bounced back. With more knowledge and information for my next set of nights- I need to prepare further. I will carry more snacks on my person. I will increase my intake. Self care, such as yoga, journalling and talking each day will be a priority and not an after thought.
My tool kit is more substantial.
Recognising a slip is vital to enable you to seek help and the support you need.
Recognising it early can help you get out quickly.
It’s obvious to me these slips came from:
⁃ Skipping meals (no matter how innocent)
⁃ Eating in isolation.
⁃ Blasè attitude “no big deal”
These are known triggers for me. Knowing your triggers can help you prevent and identify potential setbacks/ relapses.
Preventing setbacks is not always possible.
But planning what to do in the event is key.
Make your relapse prevention plan. Update it with each learning experience.
Most of all- choose to get back on track. Choose to put the match out, don’t start the fire. A moment of struggle doesn’t mean failure. Be kind to yourself and keep going
A trip we made to Sri Lanka in March 2019. My final wake up call before seeking help for my eating disorder.
It was not the wonderful experience that it should have been, or our pictures from our travels captured. They say “a picture paints a thousand words’, but most of what you see is what my eating disorder did for years, fake an exterior. It was this trip that I for the first time in 15+years, began to see how much of an issue my eating disorder really was.
For years my eating disorder had concealed the negative impact it was having on me.
My eating disorder was slowly killing me. If you are starving, you’re slowly dying. My friend if you need this sobering reminder, people die from eating disorders. We forget this when we are dancing with the devil. Or perhaps, we no longer care, when it’s painful to sit, or our body is covered in fine hair because we can no longer keep ourselves warm. We ignore message after message from our bodies until, if we are lucky we WAKE the FUCK up. It’s not just us that our eating disorders impact upon. Truthfully when engaging in behaviours and driven by the numbers, I didn’t worry about the effect each action could have on my partner, parents, brother, friends. But our actions do matter, If I had have continued I would have likely ended up as a stark statistic. Remember, YOU matter, your life matters and you affect many people’s lives. Please wake up.
That trip I felt completely lost and trapped in my relentless behaviours that had been by my side for years. I had no idea how I was ever going to step outside of the grips my eating disorder held on me. But I knew something needed to change or I would slowly but surely die.
What made me wake-up?
I realised I wasn’t living. If I wasn’t living, what was I? It became so obvious to me on this trip because Sri Lanka is full of beauty, but I felt nothing but cold.
I was done with the comments from peers and concerned looks. I hated it.
I was done with feeling nothing but bone cold, ALL OF THE TIME. Even in 30 degrees heat. I wanted to see past the brain fog and constant chatter.
I didn’t want to live like that anymore. I couldn’t live like it anymore.
This was not the first time I had had a moment of clarity, a few years prior I knew things were far from in control, but I didn’t seek help. I thought I could fix myself by eating a little more. Things got better for a time, but without support things soon descended back to the familiar chaos and calm of my eating disorder.
But this trip was different. Something needed to alter. I had reached “rock bottom” and I had to crawl out.
I wanted to be present, to share the experience but my eating disorder bled into everything. It was all encompassing. I was afraid for the first time. I was scared this was either going to be my life, or it would take my life.
It was the first time I realised how much stronger the eating disorder voice had become and how buried I was. I feared I had lost myself forever, I couldn’t recall when I was last in the driver’s seat of my thoughts. This was a sobering moment, at the same time I felt powerless to do anything about it.
These moments of clarity would pass again, and my eating disorder would begin to fool me once more that I was in fact fine, convinced me I wasn’t “sick enough” or that I even had an issue. However my healthy thoughts, were desperate to be heard and me listen. And so, it was this trip, I shared with my partner some of my story, although by this time it was hardly a secret.
Even though this trip was incredibly painful, I remain grateful for it, because it was like a wake up call and it kickstarted my true recovery process. Seeing pictures of the trip makes me sad for memories and experiences my eating disorder stole from me but I’m so thankful to be where I am now. Writing this.
If you’re in this dark place, THERE is always hope, It is never too late to seek help. And, you don’t have to go at it alone. You don’t have to have answers. Choosing to reach out of help is the biggest step, the rest will follow if you trust in the process and take that massive leap of faith.
There are stages we go through prior to starting recovery and then during recovery itself. I think we flip flop between them whilst we go to war with the two voices in our head. But we can all win, it is possible.
To me the stages look something like this:
◦ The “I’m fine. I’m just super healthy. I’m totally in control” stage.
◦ “Something’s not quite right with what I’m doing, but it’s ok right? I know I can stop if I want to. But I don’t want to” stage.
◦ The “Shit, I can’t stop. Well better just keep going. It will pass. It’s not that big a deal?” Stage
◦ The, “Ok, I think this is probably a problem. Not sure I want to do anything about it. But not sure how long I can keep going on like this” stage
◦ “Ok, I’m so done with this, I can’t keep living this way. But I don’t feel I have any control. I’m not sure I can stop” stage. This is the point I got to when I sought recovery. It’s one of the scariest decisions I’ve ever made.
◦ “Let’s try this recovery malarkey out. What do I have to lose? But I’m so scared of the thought of change”. Stage
◦ The, “Oh my god, this is way too hard. I’m never going to recover. Why even bother trying” stage. I think it’s common here, we often resort to old behaviours intermittently whilst making small changes in recovery. But the small changes matter and count.
◦ Then something clicks/ it’s like a switch. Recovery becomes easier. It’s still bloody hard but it’s less of a monster than the one that’s been dictating your life. This stage, you start to question your eating disorder thoughts, your own thoughts start to become clearer and in the foreground more frequently.
◦ It doesn’t take much for your ED to lure you back, a slip or relapse happens. But you learn from them and each slip you get wiser. Recovery gets stronger, you get stronger.
◦ Now you really want this, recovery feels achievable . You begin to see who you really are, what your life can be without this hitchhiker. You remain vigilant and know how recovery can look and you make it your mission to not go back. You’ve got this. Your actions and thoughts are all protective of your recovery, you have worked harder than anyone will ever know to be here.
Recovery is always possible, no matter how deeply trapped, lost or afraid you feel. Wake up, and rejoin the world, you deserve a full life and the world deserves to have you in it.
Check out the links below for seeking support/ starting the conversation:
We have just returned from a few days holiday, which I feel incredibly lucky to be able to do for numerous reasons, 1. We live in a place we can travel at present and secondly my eating disorder was not allowed to dictate my behaviour for the first time in many years.
Why are holiday’s so hard for people with an eating disorder? Often in the midst of an eating disorder we use behaviours to cope with uncertainty, change or triggering situations. Firstly, you are away from home, your regular environment. This can be full of uncertainty and planning can go out of the window. Tonnes of food challenges can arise. Challenges you may not have foreseen, such as not being able to follow a regular schedule, a meal plan. Eating out and experiencing new dishes. All of these things can be extremely triggering. It’s hard to imagine if you’ve never experienced an eating disorder.
Here’s how a holiday for me used to look like:
Weeks leading up to vacation:
Enormous anxiety and dread. Escalation in behaviours in response to increased thoughts and fears regarding the uncertainty of said trip. I would buy into the “ prepare for the summer body diet culture crap” and it would set my eating disorder into a frenzy.
Then the event would arrive, no matter how much “ event restriction/ compensation” I had undertaken I would still feel ridiculously out of control and fearful that my constant was about to change. I would not be able to predict every meal and therefore calculate my intake. Holidays can be inactivity. This used to terrify me, how was I going to hide my “craziness’, fit in my ridiculous workouts in new territory? All the while Hitchhiker ‘HH’ would be telling me I was disgusting. How can anyone be present and relax on holiday when this is going on?
Changing experience of holidays’ with time and at various points in recovery;
Once I commenced recovery the anxiety around the trips shifted to a different kind of anxiety. When you start recovery, especially early on, you need to eat very regularly. Holidays can make important established routines very tricky to follow. I would worry if I would be able to eat the food available. Eating in front of people can be immensely anxiety provoking and largely, trips involve eating out. It’s a point where you are challenging ‘fear’ foods and there’s all kinds of food challenges that can happen on trips which for the person experiencing an eating disorder is overwhelming.
Some restaurants very unhelpfully have nutritional values on their menus which can be a minefield for those of us trying to recover from an eating disorder. Trying to do the “ right thing for recovery” when in an already stressful situation and then presented with your demons on a plate, in every sense is really freaking hard. I used to use one hand to block out the numbers. Or ask someone I trusted to look at the menu, find something I’d like and pick until I could deal with this. Until I got to this point, my eating disorder was too strong and it would not allow me to choose what ‘I desired’. This adds to the stress, feeds the eating disorder and makes the time really challenging. It gets better, I promise.
You can’t switch your calculator of a brain off overnight. It takes time and practice and many situations and repeated actions until your brain doesn’t equate the numbers with relevance. But it can be helpful to go to places you don’t know the nutritional value, because your well trained brain sometimes doesn’t switch off for familiar items. Now I can go to a restaurant with the nutritional values and choose what I desire without coercion. It irritates me that the diet industry even seeps into the catering industry and influences our choices. (I spent ages in recovery with a black marker pen scrubbing out nutritional values on boxes etc) Now I don’t automatically read or know the content of EVERYTHING. IT is possible to train your brain to stop paying attention with effort. Black marker pens are brilliant for this.
ALSO, FOR THOSE WHO NEED TO HEAR THIS, I’M GOING TO SAY THIS ONCE: CALORIES IN DOES NOT EQUAL CALORIES OUT. OUR BODIES ARE WAY MORE INTELLIGENT THAN THE PEOPLE WHO CAME UP WITH THIS LIE.
What my life would look like after I returned from a holiday:
A completely false sense of guilt for the “loss of control”. I say false because, I was not in control on any of the trips. I had abided by my eating disorder rules and stipulations. I might have eaten something slightly outside of ‘HH” rule book and paid an enormous price of guilt, shame and most importantly regret for all the things ‘HH’ made me miss out on because I listened.
I would return from holiday, unhappy, compensate for my warped view of the trip and over value I placed on it and nothing would change because an eating disorder is a constant event planning, life of restriction.
A Vacation now:
Leading up to the holiday, the old neural pathways are fragile and the ‘HH’ thoughts do get louder. The thoughts around compensating return. But the big difference now, I know these thoughts are lies. The do not lead to me feeling happier, more confident on my holiday, more relaxed and present. No the complete opposite. Therefore, I have to be vigilant I have to make an effort to do the opposite.
Vacations are a trigger. Knowing triggers, helps you plan and prevent slips or relapses or in the event of either recover from them quicker.
My husband and I talked about the trip prior. He knows my triggers pretty well now.
For me, this meant, making sure we always have ample snacks around incase we get caught somewhere ( we spent 6 hours driving and quite remotely at times).
We knew some of the foods would be challenging- so I set myself some food challenges. Like eating spontaneously on the road, eating foods that are deemed as “unhealthy”. When realistically no food is unhealthy it’s all fuel.
It was going to be the first time on a beach in my togs since I weight restored. This was a huge one. Putting on swimwear for the first time, since weight restoring is a whole new chapter in recovery. I’ve gotten used to wearing larger clothes to my previous weight restored body. That was a challenge in itself. But putting on swim wear is next level discomfort and vulnerability. Society tells us, to go to the beach we need to be “bikini/ beach/summer body ready”. Just putting it out there now, “bikini/summer body’s” do not exist. It’s a societal fat phobic term, the body you inhabit in, is beach ready whenever. If it can get you to the beach, it’s ready!
Learning to adapt. This has been a massive one for me. Whether it’s adjusting to body image, which is something that naturally creeps in on vacation. Being surrounded by different body sizes, it is important to feel as comfortable in your skin as you can. Wearing clothes that make you feel comfortable helps. My body is very different now in recovery, feeling confident and comfortable is hard. It is possible my friend, you shift your focus to the activities you are participating in, rather than the body you are in. I am grateful to this body because it’s this body that allows me to enjoy rather than fixate and agonise. No matter what body you are in in the midst of an eating disorder you won’t be happy.
But for the body image stuff: I tried to think about it this way..
Why is it, the least interesting thing about someone, their appearance is what we judge them on so heavily?
Personally, I think I have nice eyes, but that is one of the least interesting things about me.
There is nothing interesting about your, shape, weight or appearance. I don’t care how much you weigh or size jeans you wear.
This has helped me this week when I found my thoughts drifting to judging my recovering body. Instead I know I was mean on a paddle board, I am funny and a kind person, that’s way more interesting than worrying about the other crap.
I’m at a place in my recovery where I can eat out, and this can be regularly. I found this really difficult previously. Even so, my old thoughts were there on occasion but each meal I challenged them and moved on. That doesn’t mean I found the holiday as easy as someone who has never experienced an eating disorder. I still had to choose recovery at least 3-6 times a day and not let those decisions impact upon my plans or activity. But I did not engage in the ‘HH’ thoughts.
The holiday was more free and flexible. I felt present. I wasn’t bone cold in 25 degree heat. I wasn’t calculating. Goofy yes, calculating no.
This level of flexibility and freedom is something that has come with persistence and time.
Holiday’s are a time for rest and recuperation from the craziness of our day t day lives, for people with eating disorders they can instil extreme anxiety which diminishes any prospect of relaxation and enjoyment. But there are ways of managing them. As outlined above I think some of this will depend on the stage one recovery to the extent of planning and support required around them. But they should not be as stressful, so I hope if you are someone with or supporting someone with an ED, you can find someways of reducing the anxiety.
Things that I have found to be helpful when planning trips:
1. Talking with your treatment team before (and after)
2. Planning for potential triggers
3. Identifying potential triggers and a plan in the event of trigger-what’s in your toolkit
4. Planning food challenges for the stage of recovery, with appropriate support.
5. If following a meal plan, how the trip might be helpful or detrimental and planning around this
6. Wearing clothes that make you feel good.
7. Making sure you always have appropriate fuel available
8. Do you need to know where you are eating? (again I think very individual) I did at some stages.
9. What activities will you be participating in
10. Who are you going to be travelling with, are you supported/ triggered by them.
All of these are or have been part of my own trigger prevention and plan. This is growing/ changing as I encounter potential triggers or progress through recovery. You might have some similarities but you WILL have your own.
“Strength in vulnerability” Sound like opposites to you?
I have lived my entire life holding this belief. With the sense that showing vulnerability was demonstrating weakness. How incorrect this belief is.
From the wise words of Brenè Brown:
“Vulnerability is the birthplace of love, belonging, joy,courage, empathy, and creativity. It is the source of hope, empathy, accountability and authenticity. If we want greater clarity in our purpose or deeper more meaningful spiritual lives, vulnerability is the path.” (1)
This concept is a difficult one, when we have spent our entire lives believing weakness and vulnerability are one of the same.
But for me, I didn’t truly understand the meaning of vulnerability. Why is it such a difficult emotion for us to experience, why do we numb it?
Brenè Brown defines vulnerability as “uncertainty, risk and emotional exposure”.(1) I feel this depicts eating disorder recovery in one sentence, it’s beautiful; and it’s true.
People in recovery are anything but weak, I am yet to meet or speak to someone with an eating disorder who I consider weak. The people I have come across are some of the strongest, kindest, most resilient people I’ve encountered on all parts of my life.
Eating disorders are encompassed by guilt, shame and fear of being vulnerable. Feelings and emotions are viewed as weakness. During recovery, emotions that had been buried, lost or numbed are reclaimed and owned. Sometimes, all at once!! Some days in early recovery it’s a cluster fuck of emotions. Recovery is learning to tolerate these emotions and not numb out. This is embracing vulnerability.
Vulnerability for me has been, fear of being perceived as weak, judged, failure or a disappointment.
My eating disorder numbed everything,including these feelings but at the cost of all my positive emotions.
Exploring vulnerability has opened up my authentic self. I have never felt so vulnerable than these past 18 months, admitting my imperfections, my shadows.
I don’t see vulnerability as a negative now. It’s neither positive or negative, it’s just part of what makes us all human.
“Imperfections are not inadequacies; they are reminders that we’re all in this together.”(2)
Why shouldn’t we show vulnerability if it’s the foundations of how connections are made, creativity and passion is discovered? Connection can overshadow shame.
Yesterday I did something I would have never imagined myself doing, even a few months ago.
I shared my experience with anorexia publicly on my personal facebook account. It’s National Eating Disorder Awareness (NEDA) week in the US, which will be followed by the UK and Australasia next week. And So I decided, why not share my most “feared” secret with the hope of encouraging others to seek help, de-bunk myths and stigma and challenge attitudes.
I’m not going to pretend it was easy. It was more terrifying than either of the bungee jumps, sky dives I’ve done. Not nearly as scary as starting recovery, which is why I felt so compelled to do this . I know I am not alone but I am lucky, so lucky I have had help and support. It took nearly 2 decades to seek the help, which is sad, because this is not uncommon.
If my share changes one attitude, helps one person reach out for help then a little bit of fear is nothing. I’m fortunate I have found my voice. Many people remain struggling in silence. I’m not advising everyone to share their stories. It’s taken a long time for me to reach a place of acceptance and resilience. I know there will be some negativity from sharing such. It will come from ignorance. I feel equipped to deal with these because the majority of responses have been positive and most importantly I didn’t do it for the external validation. I am happy enough with who I am, I did it for those who are not. Those battling stigma and shame everyday.
There’s tons of ways to raise awareness for a subject, not everyone will comfortable with sharing personal accounts and that is ok. Have a look at some of the links below, NEDA and BEAT of how we can raise awareness and fight stigma.
For a deeper look at vulnerability, shame and guilt I recommend checking out: