The 11th of April this year will mark the two year anniversary of my admission to the Melbourne Clinic’s eating disorders program (EDP). For eight weeks exactly, this hospital was my home, my fellow patients my friends and the nurses, social workers, psychiatrists and dietitians my teachers and allies.
I want to write in depth about anorexia because it is a terrible, terrible illness and it is something which MUST be discussed more. Unfortunately, a huge taboo still exists around eating disorders, larger even than the taboo for depression or suicide.
In order to break that boundary with at least a few people, I am going to bare all (something incredibly uncomfortable for the anorexic part of me, thus good for my health) and explain this mysterious disease that makes people, young and old, women and men (yes, men can suffer from anorexia too), slowly disappear and fade away.
Terminology: The way we talk about anorexia, when we do bring up this illness that makes us all uncomfortable anyway, we use the wrong words. Let’s take two hypothetical situations.
- June has been diagnosed with lung cancer. She has to share the news with the people close to her, so she tells them she’s suffering from lung cancer. It’s a viscous growth on her left lung, attacking her body’s ability to function normally.
- Lucy has just been diagnosed with anorexia nervosa. She has to explain this to her family and friends. She tells them that she’s a terrible, weak person and that she needs to gain some self control.
To most people, there is no problem with these two scenarios. However, let me reverse the words and see what you think now.
- June has been diagnosed with lung cancer. She has to share the news with the people close to her, so she tells them she’s cancerous. She explains that she is a weak person, and that she must have got this cancer because she isn’t a good enough person to fight it.
- Lucy has just been diagnosed with anorexia nervosa. She has to explain this to her family and friends. She tells them that she’s being attacked by anorexia, that she is suffering and that it is not normal for her body and mind to be like this.
The latter explanation makes way more sense, and is so much more helpful. If we say someone is anorexic, we are perpetuating and reinforcing the idea that they need to be skinny, over-exercise and feel bad about themselves.
Anorexia is NOT a lifestyle choice, it’s an illness, just as legitimately as lung cancer, diabetes and tuberculosis are illnesses.
Signs and Symptoms: As with so many illnesses, anorexia manifests itself in each individual it targets in a different way. If you say yes to a few of the following points, it’s possible that you’re suffering from anorexia.
- Repeated dieting
- Talking and thinking about food a lot
- Increased or obsessive monitoring of food (this could mean reading labels, counting kilojules/calories etc.)
- Lying about not being hungry/having already eaten
- Compulsive and/or strenuous exercise in order to lose weight
- Eating tiny amounts of food (sometimes restricting food to the point of starvation)
- Trying to ignore hunger, or welcoming the feeling
- Drinking water in order to ‘fill up’
- Taking ‘health’ ideas to the extreme: aiming for no fat, eating only fruits and vegies (nothing else), excluding carbohydrates etc.
- Only eating one sort of food
- Consistently skipping meals/snacks
- Changes in weight
- Fainting, headaches, dizziness
- Mood swings
- Stopped periods (for girls)
- Increased anxiety around food and social situations involving it (e.g. parties, going out for coffee etc.)
- Intense shame about body image and feelings of guilt after eating
- Stomach pain
I don’t think it’s helpful to highlight exactly which of these applied to me, but if you are wondering, the majority of these signs were present to some extent. I was certainly obsessed with reading food labels, weighing myself almost every day and taking the idea of ‘healthy’ to the extreme.
I had no idea that I had a problem for a long time. The thing is, most people don’t choose anorexia, it singles them out. Similarly, most people don’t suffer because they want to be skinny, but rather because they are yearning to be in control of their life. Anorexia is insidious, you don’t suddenly become unwell. Gradually an anorexic voice takes charge of your brain, like a slow-motion plane hijacking.
To begin with, the hijacker is charming and friendly, and it seems that they are a reasonable voice to listen to. However, the hijacker rapidly hems you in. Nothing is ever good enough, you are never enough, but you’re also too much.
It’s a world of dichotomies, confusing to an extent that it’s impossible to see that you are on a dangerous trajectory.
You are not choosing a path, but being chased along it, followed by a dangerous person armed with a whip, a gun and any other coercive measure possible.
For a while, let’s call it the ‘honeymoon period,’ anorexia gives you a sense of control over your life. Inevitably however, this period ends, as do your actual periods after a few months, and you realise that you are no longer running your life. Quite the opposite. You no longer have any control, any autonomy over your own mind or body. The anorexic voice (Ed – short for Eating disorder) has complete control of your life.
The task for recovery is to reclaim your mind, body and soul by overthrowing the dictator before it’s too late. You have to battle and vanquish the hijacker so that your plane doesn’t crash into the ocean, but instead can land on dry land.
Unfortunately, I can’t tell you that the flight path is easy. It’s the most turbulent ride you’ve ever experienced. You fly though thunderstorms and icy winds. If you manage to land, which most of us can with some help, another hijacking is always a possibility.
Impacts: After a while, anorexia starts to impact your life in big ways. Suddenly, normal things like going to a friend’s house, taking a walk or doing your homework become much more difficult.
The idea of going to a friend’s house sparks intense fear and dread. What sort of food are you going to have to eat? How will you feel? What will your friends think of you? Will you look fat? Will you be able to avoid eating pizza/ice cream/chips/cake/lollies etc.? Will you enjoy yourself?
Going for a walk becomes difficult because no matter how far you go, it’s never enough for Ed. At the same time, your body is so undernourished that you hardly even have the energy to walk a block. What was once enjoyable has been twisted into an activity to try and satisfy Ed and make yourself feel more comfortable, as Ed will be appeased if you have burnt calories. The walk may make you feel worse though as dizziness, headaches and exhaustion ensue.
Without energy, your brain starts to function more slowly. Your mind and body are in survival mode, and are not functioning at their optimum level. Instead of being able to focus, you feel distracted, tired, distant from your work. Your brain tends to go back to its sole focus: food, anxiety about food, ways to remove fat from cooking, how to eat less but still act normally, how to lose more weight etc.
Recovery: Having no energy, being anxious all the time and not being able to focus is NO fun. For a while, that sense of control gained through anorexia is thrilling and weirdly gratifying, but it doesn’t last. You can either become completely habituated to the feeling of starvation, the adverse effects of anorexia, and continue in a downward spiral towards death.
Or, a small part of you may just protest. That small part of you is the one part of you that is hardest for Ed to claim: your soul. Your soul knows, no matter what’s going on in your brain and consciousness, what is truly good for you. If you hear a little voice in your head or see even the tiniest of hints that you’re not on the right path with Ed, tune into it.
For me, seeking help was not a conscious decision. The health professionals around me realised through our dialogue about all the other things that were going on in my life that my eating habits, weight and attitude to food, exercise and my body had become completely unhealthy.
Sometimes, seeking help is such an impossibility for a sufferer, that they are forced into hospital as their illness is so bad that it is endangering their life. Some are not in quite such dire situations but are still unwilling to take the first step themselves.
Anorexia has the highest mortality rate of any psychiatric disorder, as sufferers are completely overtaken by their illness and either unable or unwilling to seek help. This is why we all need to be educated, so that no one can slip through the cracks and become another hijacking victim.
I realised very quickly that I was pretty sick. Eating a muesli bar, a tub of yoghurt and a sandwich were all huge challenges for me given the amount of control anorexia had. On my second day in hospital, I cried all morning. The kind of crying that you simply cannot control. The feeling of being out of control was the precise feeling I had been trying to muffle with my eating disorder and it was petrifying having my sense of security and stability collapse. I felt an incredibly deep sense of brokenness, a sense that I had hit rock bottom.
For my first few weeks in hospital, I simply focused on going through the motions – eating what I was told to eat, sleeping, listening in the group discussions etc. However, I hit a stumbling block after four of five weeks in hospital – Ed’s voice was getting louder, protesting harder, causing new lows in my self-esteem. John-Paul Sartre said that, ‘words are loaded pistols,’ and this was certainly true of Ed’s words. I couldn’t look at myself, I couldn’t touch my body without feeling disgusted. I had to cover my bathroom mirror in hospital with posters, I had to prevent myself from ‘body-checking’ by feeling for the bones on my body and I had to close my eyes whilst I got changed. It was the only way of continuing my recovery.
However, I wasn’t alone and I knew I couldn’t win this fight solo. During my recovery, I had a whole team of people around me. My family, my close friends, my psychiatrist, my dietitian, social workers, a family therapist, nurses, co-patients who were also trying to recover from anorexia or other eating disorders, an art therapist and my physiotherapist.
I also had a wealth of tools at my disposal: recovery books, music and singing, art, gardening and nature, meditation, mindfulness, reading, craft, talking and most importantly for me, writing.
Things gradually improved, although progress was sometimes painfully slow. The food challenges got more intense, from muesli bars to Tim Tams, from yoghurt to ice cream, from sandwiches to battered and fried fish and chips.
Exiting the hospital Eating Disorders Program was scary, but I was ready.
One of the biggest dangers for anyone who has suffered from anorexia is relapse. 15-25% of patients deemed ‘recovered’ relapse within two years. This is one of many reasons why I don’t like the word recovered.
I prefer to say that I am recovering. Being in recovery is not a bad thing. It implies a sense of fluidity and movement, it allows for both gains and setbacks. I am in a good place in life, but I’m still encountering obstacles, still learning to understand my body and mind, and still plucking away at the never-ending task of separating healthy thoughts from disordered ones.
Staying Well: With the strong prospect of relapse, relapse prevention becomes a key. It’s best not to frame it in these terms though, but instead to focus on being well.
As I gradually got my life back from anorexia, I was able to make decisions for myself again, and decide where I was heading.
Philosophy and ethics became a huge part of my life through my writing, thoughts and reading. The catalyst for this was ‘Practical Ethics’ by Peter Singer. I first picked up this book at one of my lowest points, wondering whether euthanasia would be legal in my case, as a sufferer from a chronic illness.
I didn’t read it properly until a few months later. In a slightly better but not wonderful headspace, I discovered something profound: my life needed purpose. I needed to make decisions not just based on what I felt I wanted on the spur of the moment, but based on strong principles about justice, equality, humanity, and compassion.
This abstract thought pathway actually helped my recovery from anorexia. It allowed me to relate to myself and my life in a way that didn’t focus on food, body shape or self-worth. These were big picture issues, things that affected all seven billion people on our planet, not just me.
In short, I had suddenly gained both purpose and perspective.
Through my writing, I also started developing guidelines and principles, NOT rules, which helped me to stay on track with my recovery. Eating became not about minimising calorie intake, checking ingredients and losing weight, but about enjoying tastes, eating what I felt my body needed and having a bit of everything.
My body became less of an object and more of a vehicle. My ‘body image’ my was now less about appearance, and more about function. My ability to think, talk, walk, taste, jump, dance, hear, smell, touch and sing prompted me to be thankful for my body, and to cultivate kindness towards it, instead of harsh judgement and criticism.
The notion of beauty became not an artificial construct but a pervasive concept stemming from nature. Being around flowers, trees, beaches, forests, animals and other people gradually allowed my brain to reform its concept of beauty. Not only is beauty on the inside, it’s everywhere, just not everybody sees it.
The Struggles of Today: Clinically, I am recovered. I am a healthy weight, I exercise when I want to, I eat three meals and three snacks per day, I am relatively confident in my own skin, I live like a normal person.
However, there are three things that still get me: ghosts, dysmorphia and seasons of celebration. I realise I need to explain these so here goes:
GHOSTS: Ghosts are people who I see around me, whether I know them or not, who seem to be suffering from anorexia. I have a pretty keen eye for this, and it always hits me. It doesn’t necessarily make me want to go back there, but it reminds me of painful feelings. Almost every time this happens, I write something (e.g. https://lovehopepeaceinitiative.wordpress.com/2014/09/21/ghosts-a-poem/). I cultivate an alliance in my head with this person and send them thoughts of loving kindness and compassion.
DYSMORPHIA: This is still my biggest issue. Whilst rationally I know that I am healthy, that my body is everything it needs to be, my body image is incredibly inconsistent. Sometimes, within the space of a day, I yoyo multiple times between looking in the mirror and seeing someone fat, and looking in the mirror and seeing someone thin.
Seeing who I truly am is rare, I still have Ed’s glasses on a lot of the time. But I am getting to see my true self more often, and I am able to get through dysmorphia by applying a simple rule: If I can’t stand in front of the mirror and say something good about myself, I shouldn’t stand there.
I also write about dysmorphia a lot, in an effort to overcome it and understand it (https://lovehopepeaceinitiative.wordpress.com/2014/11/13/dysmorphia/)
SEASONS OF CELEBRATION: This is only sometimes an issue for me. You know how Christmas is all about stuffing yourself with way too much lunch, Easter is about eating copious amounts of chocolate and hot cross buns, and Birthdays are about cake and junk food?
Well for a recovering anorexic, these times are not always easy or fun. Feeling full is always uncomfortable for me, as anorexia links full with fat. Almost all of the foods served at these occasions are what are called ‘fear foods,’ i.e. Ed freaks out around them and tries to find creative ways of not eating them.
My best advice for avoiding issues during these times is here: https://lovehopepeaceinitiative.wordpress.com/2014/10/25/relapse-prevention
Conclusion: Whilst being in hospital was not really pleasant, I look back on my time in EDP and see it is a time of blossoming. From behind the control of a terrible hijacker emerged a strong, inspired young woman.
My memories of this time in my life are so strong and powerful that certain smells take me right back to the ward. Coffee in the morning, the MOR hand cream which we all shared, cigarette smoke on clothing, and women’s powder.
I am fully aware that I have just written a huge epistle, but it had to be this way. I think that it highlights how complex anorexia is as an illness, despite the common attitude still being that sufferers should just ‘eat something and get on with it.’
I hope you’ve realised through reading this that it’s just simply not likely that AT ALL. It’s more complicated than most illnesses, and that’s why it’s so hard to recover from.
My thoughts are with anyone currently suffering, I know how much it sucks.
Love, hope and peace from Emma.