What I Wish I'd Known About Eating Disorders

Common misconceptions and what I learned through my own experience

Nobody sets out to intentionally get an eating disorder, in the same way that drug users don’t set out to be addicts. The disease becomes the unfortunate result of behaviours that developed as a way to deal with personal suffering.

My own experience is that I was initially both unaware and excruciatingly uneducated as to what an eating disorder was. So I had no way of recognising the warning signs that would have presented themselves along the way.

Here’s some of what I wish I’d known, what parents should know, and what I think most people still misunderstand about eating disorders…

Eating Disorders Are Not About Wanting to be Thin

Personally speaking, it was never my intention to be thin. I wouldn’t have thought it was possible. I was always told I was ‘sturdy’ at worst, ‘athletic’ at best. I knew I didn’t have the waif genes I admittedly envied, but I was more or less happy with my body and definitely loved food too much to even think about eating less.

Don’t get me wrong, I’m sure there will be individuals that quest for ‘thin’, but it’s important to understand that eating disorders aren’t about body image. They develop from a deep-rooted belief in the psyche which says ‘I am not good enough’. And this can manifest in many different forms, behaviours, shapes and sizes.

For me, it crept in slowly. I was having a difficult time both at home and at school and assumed the problem was me - so I wanted to change. Never one to feel sorry for myself, I wanted to take action. To feel empowered in making that change. Finding my own way on the path to worthy. A path I thought would lead to being loved. When I look back now I understand what a fruitless quest that would inevitably be. But I was 16 at the time. A teenager who thought she had the answers to all the wrong questions.

I thought I needed to be perfect. Not just in the way I looked, but in all aspects of my life. My deep lack of self-worth kept me striving for approval. To be the perfect friend, girlfriend, daughter, human. I didn’t feel organically loved, so I tried to manufacture a me that people could like. I couldn’t afford to make mistakes. Revealing one small flaw could make it all fall apart. But of course, the reality was that of course I had flaws. We are all (quite beautifully) far from perfect, but I didn’t feel that was something that would be accepted in me, so my need to appear perfect coupled with my fear of being discovered led to social anxiety, withdrawal from friends and family, and eventually, full-blown anorexia.

It wasn’t about being thin, and having worked with clients who’ve suffered all different types of eating disorders, I grow more and more frustrated by how reductive that misconception is. It wasn’t that simple for me. Yes, body size became a fixation once I was fully disordered later on, but in my early ignorance, I was just focused on self-improvement. I wanted to be the most moral, the most hard-working, the most accomplished, and ironically, the most healthy (and in our fat-phobic society, we’re told thin is healthy). At no point did I think this was a bad thing. Never did I consider it could develop into an eating disorder. I just knew I needed to be careful with what I presented to the world. To improve all aspects of my life. With very little within my control, food, exercise and lifestyle was something I could regulate. I started discriminating every choice presented to me. It became good versus bad, dark versus light in all decisions.

Excercise = good

Being lazy (relaxing) = bad

Eating more than you need = bad

Self-discipline = good

Unbreakable will power = good

…And so it developed from there, until eventually

Fat, Carbohydrates, Dairy = bad

Caffeine, Alcohol, Sugar, Salt = bad

Strengthening will power (control) through restriction = good

Soon there was very little of life (and of me) left. I had systematically demonised foods, and the result was weight-loss. I didn’t realise I was getting smaller. That I was shrinking away from the world. I’d never weighed myself - we didn’t even own a scales at home. But I started being told I was slimmer. I was congratulated on looking ‘tiny’. I felt I was becoming more acceptable within the cultural standards of body image. I never considered that what was happening to my body was destructive. That what I was shedding was not only kilos but also joy, pleasure and freedom.

What people often don’t realise is that an eating disorder gives as it takes. My body was slowly dying, but my mind had been calmed. I’d felt I was on the road to acceptance, not the fast-lane to an early grave. I no longer felt helpless, I felt powerful. I thought I was taking action and I wasn’t asking anyone to help me. It was personal and private and none of anybody’s business.

I can honestly say I didn’t like the way my body looked when it was thin. I didn’t like the way I looked at all. But I liked the way it felt. That was different. And that was what was so hard to let go of. I liked the feeling of being small. Of defying my natural shape. Mastery over what I saw as my weakness - my femininity. It was my curves that got people’s attention. My shape that got me into trouble. My visibility that caused so many problems. In my small body I was able to feel safe. A different person. A new chance at life. My brain had associated safety with self-control, with introversion, and emotional isolation. So even when I thought I had recovered, restoring my weight to one that didn’t look visibly distressing, I still lived with this psychology for 20 years. Hiding from the world and hiding from myself.

This is only my experience, but it’s important to recognise that eating disorders are not as simple as wanting a certain body type. For me, it was a quest for acceptance. A need to escape pain. A longing to disappear. Recovery therefore required courage for the unknown, a rewriting of internalised scripts, and a letting go of the idea that anyone needs to be perfect in order to be loved.

Eating Disorders Are Not About Food

I can’t count the number of times in early recovery when I was told to ‘just eat!’. As if this salient advice was a revolutionary solution I hadn’t yet considered.

Compare this to a disorder like agoraphobia. Agoraphobia is often considered to be a fear of going outside, when it’s a complex anxiety disorder which manifests in a phobia of places or situations which may prove to be inescapable or beyond our control. It’s a fear of feeling trapped, helpless or embarrassed. My eating disorder was not a dislike or refusal of food, but a phobia of my own desires and needs. A terror that to give in to ‘want’ would lead to a spiral out of control. My brain linked desire with destruction, so my appetite was threatening. Food became a dangerous substance, a poisoned apple I must not taste.

Which leads to my next point..

Eating Disorders Are Not A ‘Loss of Appetite’

There is so much misinformation available which will state that certain eating disorders are a ‘loss of appetite’. In fact, the etymology of anorexia is from the greek words to mean exactly that: without appetite. Eating disorders are not a loss of appetite, they’re a war on appetite. Somebody with a loss of appetite can still eat if they know they need to in order to keep themselves alive. In the case of a restrictive eating disorder, hunger is threatening and must be controlled. Hunger and appetite don’t go away, they get managed, imprisoned and punished.

Contrary to what many may assume is a lack of interest or desire for food, most people with restrictive eating disorders are obsessed with food, and rarely think about anything else. In the depths of my disorder, I wasted countless hours thinking about what I wouldn’t let myself eat. Worrying about what I was allowed that day and what might happen if I couldn’t stick to my rules. I’d stare at other people when they ate and listened intently when people spoke about food. I’d lie awake at night with an aching stomach (either from hunger or a binge) as I thought about what I would and would not eat the next day. My mind was consumed with what I could not consume.

What I later discovered through research and client work, is that many individuals with restrictive disorders will then channel this obsession into their career, becoming chefs, dieticians or nutritionalists. Interestingly, many who restrict food intake themselves will find themselves wanting to cook for others, surrounding themselves with food and watching others satisfy their hunger in order to pacify the mental craving.

For those who become professional bakers or chefs, it’s a chance to live vicariously through others, as if the body can be satisfied through osmosis. It can also be a no-mans land of quasi-recovery, because nobody would think (perhaps even the sufferer themselves) that anyone who works with food could have any issues with it.

It’s the case of dieticians and nutritionalists (and an incredibly high number of personal trainers also) that I find frightening however. As if these individuals are not fully recovered, they will likely be perpetuating unhealthy food ideals and health goals that they have deeply internalised. In the cases that they are still underweight (not at their healthy set weight), then they are also reinforcing unhealthy body standards and the aesthetic of what we should consider a professional (therefore premium) level of health and fitness.

I’m not suggesting that individuals who are not yet fully recovered should not go into these professions. I just wish there was more transparency around mental health so that as a society we aren’t misled by false representations of the people we deem to be inspirational in the field of health.

You Can’t Tell if Someone is Disordered by the Way They Look

This is an extremely frustrating misconception about eating disorders. Many people associate the aesthetic of an eating disorder with pictures of severe anorexia, or more infuriatingly, size zero models on the catwalk. It’s important to understand that eating disorders have serious physical implications but are first and foremost a mental illness. They live in the psychology of an internal world. A person doesn’t need to have a ‘look’ or size in order to be suffering and in need of treatment, and mortality rates remain the highest of any mental illness because the severity is not recognised (by medical professionals and the sufferers themselves) based on not looking ‘sick’ enough.

In my case, the eating disorder I experienced was anorexia nervosa. There was a time when I did look quite visibly shocking, which was distressing for those around me. Of course, that was a horrific time when I desperately needed help and support as my body was extremely ill. However, it was in later years when I had gained enough weight to be deemed acceptable that I was the most severely mentally ill. It was later that I was the most conflicted, confused and panicked. Later that I was unhappy enough to want to take my own life. It’s a sad reality that I’ve rarely seen spoken about in which a person’s mental health can continue to deteriorate despite having gained enough weight to get their body out of the danger zone. This is usually due to partial recovery (quasi-recovery) which gets the person weight-restored, but neither health professionals nor the individual themselves recognise the remaining much harder part of the journey. Being only partially recovered leaves the person extremely vulnerable and susceptible to relapse.

And when relapse hits, without adequate support, it is savage. Imagine being in an abusive relationship where a partner is violent, gas-lights you, and breaks you down with constant verbal abuse and cruelty. Now imagine you speak out about that person and have them forcibly removed from your life. Relapse in quasi-recovery is like finding yourself living alone with that person again without anyone to help you - and you’re back with the aggressor who’s FURIOUS you dared act out against them.

What we desperately need to normalise is the fact that eating disorders can not be visibly determined. And that often a person, even one in active recovery without relapse, can be in a torment of mental pain, even though to the eye they may look ‘better’.

Another aspect of this which is wholly unhelpful, is that as a society we’ve normalised looking emaciated so that even individuals who are underweight for their natural set-point (which means for them, their body is still being starved of what it needs to function healthily) would never be considered underweight. To a disordered mind in recovery, is very confusing. I’m not going to lambast the media at length here, or chronicle all the different ways in which toxic messaging has pervaded our culture, because frankly this post would run on for days, but one example that still upsets me is what I remember as the ‘Madonna Yoga Trend’, when suddenly every celebrity and their handbag-sized dog was taking up yoga and showing off their ‘toned muscles’ as a result. These celebrities were all incredibly thin, most of them thinner than we’d seen them before. They were praised for their defined muscles, but the simple fact is that muscles without enough fat covering them will OF COURSE look defined. What should have been a sign of depletion was instead heralded as the peak of physical health and the ‘look’ that young women should aspire to. Of course, eating disorders also affect men, and the toxic messaging of muscled gym-goers dehydrating themselves to look like a human raisin being promoted as the aesthetic for men’s optimal fitness is just as damaging. It’s harrowing that this is so pervasive in our culture, but heartbreaking that these trends can leave deep and long-lasting mental scars that will long outlast the physical aesthetics.

Disordered Tendencies Will Show Up in Many Aspects of a Person’s Life

Food may become the central protagonist to someone with an eating disorder, but the disordered behaviours almost always replicate themselves in other areas of life too. Throughout my disorder, restriction was my key to control. What I latterly learned is that when the mind issues an edict of restriction, the body goes into scarcity mode, which gets communicated back to the brain as a limited supply of everything. Contrary to my natural disposition, I became frugal with money, careful with my time, and obsessed with having ‘enough’ - to the point that I’d overstock cupboards, buying in bulk for the comfort of knowing I had enough to survive. I lived in a constant state of FORO - Fear of Running Out.

I’d never related this to my disorder, but the changes in recovery were remarkable. When I was no longer in scarcity, I no longer unconsciously feared that resources were limited. I could spend money, time and energy on things I would have found threatening before - such as friendships, self-care and basic pleasure! I found that I was more able to share parts of myself because there was finally more of me to share.

Disordered People Don’t All Have the Same Food Rules or Rituals

Eating disorders are incredibly individual, defined within the confines of a person’s private psychology. As I’ve said previously, my disorder developed by systematically deciding which foods and behaviours were ‘good’ and ‘bad’. This is subjective to the individual, so of course will be different depending on where a person derives their information or influence. For example, I’d been brainwashed by the fat-phobic media at a time when everything was about low-calorie this and fat-free that. At that time, I would scrutinise nutrition labels for the fat content of absolutely everything. I knew nothing about nutrition and hadn’t yet learned to demonise carbs and sugar, so in the early days, I might have a bread roll with jam for dinner. My ‘good’ and ‘bad’ foods were decided based on fat content alone.

Later, I started to learn more about macro-nutrients, I became more aware of carbohydrates, thus eliminating not only fat, but anything white and starchy too. The safe and fear foods list subsequently changed.

Then along came Keto - and it turned out there were veggies that should be avoided too - BUT fat was back on the menu.

I hope you can see how this is all nonsense. And in every iteration of my disorder, I was limiting what I was allowed to eat, never listening to what my body actually craved. By the time I was an adult, I no longer remembered what I genuinely enjoyed eating, and had no connection with my natural appetite or hunger cues.

The goal in recovery is to rediscover food freedom. It isn’t simply about eating more, or following hunger cues, which are obviously important. Full recovery is about breaking away from labelling food as ‘good’ and ‘bad’, and reconnecting with your body to allow it to take pleasure in what it enjoys.

Not All Disorders Are the Same

I’m both careful and explicit when writing my own experience to reiterate that my personal history is living with anorexia nervosa, which then developed into orthorexia, and the binge-purge cycling, common in early and quasi-recovery. This is my experience which manifested as a result of my personal psychology and life story. There are many different ways in which eating disorders can develop and vast differences in the subsequent behaviours they bring to a person’s life.

It’s extremely important to be clear about this, not just to make people more aware in a hope to improve upon the lack of education around eating disorders, but also to reassert this with sufferers themselves. A brutal part of recovery was that my disorder was constantly trying to assure me there was nothing wrong with me. That nothing needed to change. This meant that if I were to read an account of someone’s experience which didn’t exactly match mine, I would be tempted by the familiar reassurance from my disorder that said, ‘See! This isn’t you - you don’t have a problem!’.

Eating disorders are incredibly deceptive. They sound like you, they dress like you, but they are not you.

And you are not alone.