Johanna's Experience of Anorexia Nervosa
I can’t remember having a normal relationship with food, or with my body. At the age of seven I was fixated with sitting on the sofa stretching out my legs as long as possible, traumatised that they weren’t as long as those of my friends. It was around the age of eight that I started buying chocolate in secret, hiding it under my bed and eating it late at night; this was the thought that sustained me through days of bullying and unhappiness at school, where I was one of the only strong students academically and was floundering without a friendship group. Food became an entity that filled the hole inside me, a hole that should not have been there at such a young age. I refused any food that was healthy- I was worth nothing, and as such only deserved to be filled with junk, chips, chocolate, crisps, whatever I could get my hands on. I ballooned.
I was already socially separated by food long before this. At friend’s birthday parties, my parents would phone the hosting adults to make sure I wasn’t to drink Coke, I wasn’t allowed anything unhealthy, no jelly, no ice cream. For my school packed lunches, I was the only one with dry brown bread sandwiches, which I hated beyond belief. I was the only one without chocolate, without crisps. I was marked out. I was different. I screamed at my parents on many an occasion and told them how unhappy I was about my packed lunches, but they didn’t budge; hence, ‘unhealthy’ food was something to be ashamed of, and a method to kick back against my parents. I deliberately ate too much cereal at breakfast, despite being told not to, and then bought chocolate on the way to school. And so started the downward spiral.
By the end of Year Eight, I was big- really big. I started my new school, where I was a boarder. I had never had the experience of having real friends, I had no idea how to fit in socially- I am quite far down the Autistic Spectrum (this doesn’t mean I have a named condition, or have a disorder; women are generally on the left of it, men on the right, and I am a woman on the right) and the only way I had learnt to survive was to be defensively eccentric, to hide behind a veneer of defiance and forced humour. I was still an outcast. This defiance and forced humour festered into a real and toxic anger.
I began losing weight, not quite on purpose, but I was definitely trying to eat more healthily. I loved Lent because it gave me a reason to cut out the junk food. I started to lose the puppy fat I had gained. I became more confident, made more friends, hence weight loss became irretrievably linked to popularity in my mind. Sometimes people would comment on my weight loss but instead of boosting my confidence, I felt utterly crushed. All they had done was re-affirm the higher weight I was coming from. I ticked onwards through school, still as unhappy as ever, wearing two pairs of tights to make my legs appear slimmer, wearing a jumper even in blazing heat to cover my stomach. I was already preoccupied with following Gillian McKeith to try and lose weight, and by Easter 2008 I had hit a healthy weight. However, this was when my life suddenly exploded beyond all recognition. I was being groomed and emotionally abused by a close family friend. My parents deduced this, slammed a restraining order on them, and I found myself giving a taped interview at the Centre for Child Abuse Investigation. I saw the pain my parents were going through; it was my fault. I stopped talking to them entirely and had a panic attack every time they tried to talk to me about it. I couldn’t hug either of my parents for months. I refused to talk to them; if I was separate from them, I couldn’t hurt them any more. I wouldn’t go home from boarding school, instead, I would stay at my brother’s house. I had to purify myself, purge myself of all that had happened. I stopped eating.
I had no idea what was happening. I didn’t count calories, I didn’t follow a diet plan; all I knew was that if I concentrated on food, I wouldn’t have to concentrate on anything else in my life. I linked weight with everything that had happened- if I lost the weight, I would lose everything bad around me. I genuinely thought I was eating a normal amount of food, even though I wasn’t eating at all, even when I couldn’t see straight. I do remember it as one of the happiest times of my life, but this is a chemical deceit. My brain and body were in full starvation mode and I was delerious on the lack of blood sugar. At my brother’s house I ate a tangerine, because I sensed it was what I should do to keep consciousness. I was being attacked by hot and cold sweats and felt like I was going to be sick. I loathed myself for that tangerine for hours afterwards.
I arrived back at school after That Summer and rumours flew left, right and centre. “Is she anorexic?” “Did you see that picture of her on Facebook? Her ribs!” I couldn’t see a jot of difference in how I looked, but everyone was up in arms. I couldn’t stop losing weight. In the end, I was marched to the GP by my best friend, the lovely Georgey herself, who I now credit with saving my life. Mum tried sending me a box full of high-calorie snacks- I opened the box and had a panic attack, quite literally sobbing in the opposite corner of the room to where the box sat. The GP told me that if I came back the next week having lost more weight, he would seriously think about referring me to hospital. He told me this seven weeks in a row, even though I had lost more weight every single week. He called me psychotic to my face. The nurses at the surgery told me that all my problems would go away if I “just started eating a bit more.” In the end, I wound up at my outpatient service.
Treatment just bewildered me. I felt like I was never sick enough, even though I was too weak to open the doors in and out of the appointment room. I realised that if I lost more weight then I would be sent home, and it was vital that my parents didn’t get involved, otherwise they would make me eat- little did I know they were asking to have my mental capacity assessed for compulsory hospitalisation, they were up at my boarding school every week to meet with my GP without me knowing, they were writing to the staff, they were buying book after book on eating disorders. In the end, I was never sent home, and never hospitalised, but the reason was the opposite of a good one. I made sure I did no exercise, so that I never had to eat more to maintain. As a consequence, my muscles wasted away and I plastered a smile onto my face to deflect attention. My heart thumped every time I stood up, and my vision filled with a black vortex. I starved myself from Monday to Friday, ate on Saturday, and filled with guilt, fell right back into starvation. I often walked along the pavement seriously considering whether or not to step out into the road, teetering on that knife edge.
I tried to kick it more than once, but they were short-lived bursts. I became so ill towards the end of March 2010 that it makes me cry now to see photographs. The school had brilliant medical reason to send me home, and from there straight to hospital, but I was in the middle of exams and they were terrified that my home environment would make me even worse, that I would never come back alive. I was meant to be taking a trip to Africa in October 2010 for charity work, but I was told in no uncertain terms that if I got on a plane, my heart would give out. Staff members refused to go on the trip because they didn’t want to be responsible for the girl who couldn’t feed herself and who would put everyone’s lives in danger. And so started the longest and hardest summer of my recovery.
Africa was the second thing that saved my life, apart from that friend who insisted I saw the GP. It wasn’t the fact that it was a trip, or even the country in particular, but it was the only thing I had left to focus on, the only thing I had left to live for. Every motive had been exhausted and it was the one thread still dangling above my head. Without it, I would have been in hospital within weeks- I was kicking up a fuss over drinking a glass of water, it was weight, it was something going into my body. My parents travelled with me to meet with my specialist, who before this I had banned from speaking to them. However, ED was still winning; if I had to eat, I was going to make damn sure I wasn’t going to enjoy it. I denied myself foods I liked the taste of (not that I thought in terms of taste anyway- everything was calories) and drowned everything in vinegar and soy sauce. Bread became laced with layers of Marmite, Worcester Sauce, vinegar, black pepper and mustard- yes, all at the same time. If I had to drink liquid, it was water filled with vinegar and bicarbonate of soda. I arrived back at school a healthier weight- not the healthiest, but within the BMI boundaries this time. Everyone was overjoyed- they thought I was fine. I wasn’t fine, but managed to maintain my weight until bulimia struck.
It started as once every other day, after dinner. It became every day in the evenings, and when I went home for the Christmas break, I was only keeping down breakfast. To this day I have no idea if my parents knew anything, but I don’t think they did. I can’t listen to the Mars movement from Holst’s Planet Suite without being triggered, because I whacked it on every time I was sick to drown out the noise. I wrecked my metabolism; at 8pm, I was bringing up what I had had for breakfast. I busted a capillary in my nose, and my skin was tight and dry. I still have a scar from the acid burn I got on my hand. I spent the last day of my childhood being sick and hiding food in my underwear, so that my parents wouldn’t know I hadn’t eaten it, and my adulthood- my eighteenth birthday- kicked off the same way as well. If I ate liquid foods, I would be sick because they were easy to bring up. If I ate solid foods, I was so scared they were going to make me put on weight that I would bring those up too. Bulimia was like a hand controlling mine, putting them down my throat. By the end of the Christmas break, I simply didn’t know what to do.
I arrived back at school and covered it up for a while, until I found myself sobbing hysterically on my housemistress. She started supervising me after mealtimes and I had to check in with her every day to tell her what I’d eaten. It worked for a while, but then a meeting was called. I was sat in front of both sets of houseparents and we had a serious discussion about whether I could stay at the school any more. I was told that if I had another bad week at home, there simply wasn’t much point in me coming back at all. They were amazing, absolutely amazing. They told me that if they had to, they would take my A levels for me, because I couldn’t concentrate on their questions let alone a set of exam papers. I wasn’t being sick any more (with a lot of staff supervision after meals, I had curbed that, and just in time) but I wasn’t eating either. Anorexia had once again overridden everything else. Food was put in front of me, and I was told to eat it. I wanted to give up altogether. I wanted to be put on a feeding tube so that I wouldn’t have to deal with it any more. But somehow, I found the tiniest spark in me to start fighting back- this time, for good.
People think that an eating disorder is something that surfaces only at mealtimes, that it’s only present when food is around. It’s not like that. It fills every part of you, every space in your head and every heartbeat. And it’s not just during the day. I have woken up in tears from nightmares about food, ones where fountains of oil spurt out of porridge and where I’m locked in Room 101 with a table of food. I would wake up from dreams where I was throwing myself down a flight if stairs as hard as possible. It sounds flippant, but it’s not.
Somehow I have managed to get through years of school only focusing one part of my head on the board; the rest of it is constantly thinking about food, You’re hungry, You’re not hungry, You’ve eaten too much, You’ve not eaten enough, You’re letting everyone down by eating, You’re letting everyone down by not eating enough, You’re too heavy, You’re too light, You’re worthless, You’re worthless, You’re worthless. No, you can’t go for coffee, because it’ll get in the way of sitting-around-and-obsessing-time. Yes, you must walk into town, because you need to use those muscles. You don’t have any muscles. Put off eating for another half hour. You should be hungry. No, you shouldn’t be hungry. Eat it. Eat it. Eat it. Idiot, you ate it. And then someone says “Johanna, what do you think?” And somehow you form the response they’ve been waiting for all along; “I think that the strength of the play lies in the gap between appearance and reality”, dually talking about your life and that of the doomed characters, of which you are always one.
When it’s bad, there is no space for anything else. Lying in bed with a voice screaming “You’re fat you’re fat you’re fat” isn’t particularly conducive to anything useful, but you can’t make it go away. Your head is a wet towel, and the voice wrings it out like a Chinese burn. One day, you arrive at the point where you have perfected the art of seeming fine, but the act is so accomplished that you can’t remember where the real You disappeared to. And this is where I eventually arrive back at my story. I feel like I have developed the art of Myself to such an intricate degree that I have no idea who I am. I work so hard on trying to shut my eating disorder out that I don’t have room to create another person, so I feel blank. I can make a very small list of attributes that I understand to be linked with myself. Red hair (although I’m not even sure about that any more), can be disapproving at times, I work hard. I’m fiercely loyal to my friends.
But everything else, my eating disorder has stolen. I don’t know which opinions are mine and which are It’s. One of the things I am most sour about, from treatment, is that I was always, always told that the ED thoughts go away with refeeding. That never happened for me. I was told that the depression would go away once my metabolism sped up. My depression got worse and worse. After months of concerted recovery my head was worse than it had ever been, and still is. My head has never, ever gone quiet. The years have stacked up. The days spent fighting my eating disorder are well into the thousands. And it’s still there.
I have a place waiting for me at Oxford University, I have the most supportive family and friends, and I am trying to understand that I need to fuel my body to live. On the 16th of April, I skydived from 10,000 feet to raise over £1000 for the National Eating Disorders Association- working name ‘beat’. I put my life into someone else’s hands and although throwing myself out of a plane was terrifying, I knew that I could do it every second of the descent, because so many years of fighting my eating disorder have been so much harder than a mere parachute jump. Next year, I will climb a mountain. It’ll be fine; nothing can be harder than battling this illness.
To have an unhealthy relationship with food is something sadly common in this society, with 1.6 million ED sufferers in the UK alone, but the fight to overcome it when it becomes life threatening is something that is underestimated in terms of how hard it is. As I plough on through recovery, I know that I will come out the other end as someone who can face anything, because a plate of food has so often been the most difficult thing in the world to conquer. I hold the keys to recovery in my hand, and every day I turn the lock a little bit further. It’ll take years, but I’m ready for that, because it’ll give me my life back.