She taps me on the shoulder, my hungry, doubting companion. She’s always with me, like a jealous streak, a trick knee, a weak stomach, a bad heart, this hunger is DNA you cannot undo.
– Giselle, Skinny by Ibi Kaslik
I am sitting in an uncomfortable chair with an unfortunate red and teal pattern, opposite from the deputy principal while he looks at me with an apprehensive expression. With tented fingers he looks at his desk, trying to think of something to say to me, and settles on asking me how I can enjoy throwing up. What he fails to understand is that I don’t enjoy throwing up, but that isn’t even close to being the point. I don’t expect him to understand, in fact I don’t even want to be having this conversation, but the guidance counsellor is an over-sharer. Do people really think that bulimics purge because we enjoy throwing up? As though vomiting is some hidden aptitude that makes me look down into the toilet or sink with pride and say, damn fine purge, damn fine indeed. I lean back in the chair and let my gaze drift to the window with its crooked Venetian blinds. This is not the first time I have heard these questions, the few people that have come to know about my condition have asked, but I struggle to answer. They do not come right out and say it, they resist in the name of polite conversation or the facade of respect, but it gnaws at them, like an itch they know they shouldn’t scratch, until they cannot help but come out with it – why do you do this? I long to tell them that I don’t exactly know myself. There is a dysphoric feeling that I cannot identify, there are anxieties and insecurities, but there is no simple reason why; so I mutter something about it being complicated. People do not often like this answer, it is not satisfying to them, it isn’t simple.
I have come to understand that people crave simple answers. They like simple cause and effect relationships. As a nurse I have seen the longing for these simple answers in the eyes of patients, desperate to pinpoint an instance in their timeline that has led them to their current state of being. I understand the appeal. It’s comforting to have straightforward reasons for why things happen, especially in a world where few things are certain.
However eating disorders are not a simple disease, and they do not have simple reasons behind them.
At first she is a whisper, and my sensible self easily dismisses her or shows me the “right” thing to do, but from the beginning she intrigues me. She is me, she speaks with my voice like any other thought a person might have, but somehow different. I will come to realise that she is the voice of my bulimia. She appears out of nowhere, an apparition, sent from hell or heaven I’m unsure. She is as sweet as syrup on pancakes, encouraging me, telling me how smart I am, congratulating me on this newfound power I have discovered within myself. In English class she whispers to me, doesn’t that feel great? You can feel it anytime you want and no one will ever know. My other thoughts immediately chase her off, telling me that not eating is a stupid idea because I’ll get hungry, eat, and hunger will control me as it always does, as it does anyone – the drive to eat is the drive to survive and I must surely want it that way. I hear my other thoughts and accept their logic, but she knows that I have heard her and that I am quietly curious about what else she has to offer.
The quiet chug of the train is soothing as I lean my head against the window. The world outside is cloaked in the dark of night and watching it fly by brings me momentary peace from her tiresome voice. I have a thick pathophysiology textbook on my lap and Bruce Springsteen sings a mellifluous tune in my ears; I am transported to the Asbury Park boardwalk, I walk through the darkness on the edge of town, and I face a wall of fiery light with a firefighter. The carriage is empty and I am alone not only physically, but with my thoughts too. In these dark hours her voice is quiet, and more logical thoughts slip into the front of my mind. I question why I am doing this to myself, her voice becomes a source of fear and helplessness. I don’t feel in control anymore, instead it is though she controls me. I crave control so badly that cannot let her go, even as I begin to realise that I am sick. She has helped me through year eleven so far, praising my triumph and keeping my head in the game when I fail; sometimes she is cruel and mean, but she also takes care of me when I think no one else understands.
I am travelling from Varsity Lakes back to Brisbane after my university class on a Wednesday night in July. I have started taking a first year communications course at a university on the Gold Coast, a program open to year eleven and twelve students with high grades and faculty permission. Due to the distance it takes to travel to the campus and my array of extra curricular activities human biology with the practical and lectures on different days is out, so is Monday morning law and society. I don’t mind though, because access to collections of journal articles to add some much needed collegiate pizazz to my high school work is reward enough, true nerd that I am. Wednesdays completely to myself are another perk, one that I am more than happy to indulge. It is my escape, a place where I do not have to worry about who sees what. It is a whole new dimension of my intoxication, being able to sit in university classes as a fifteen year old and not only keep up, but excel. This is another reason, it occurs to me, why I cannot give her up; other people had already burnt out in year eleven and more would surely follow, but she made me feel protected. I have managed to excel in spite of my crippling anxiety, in spite of my pain, in spite of everything. Everything is fine, and everything would be fine. I whisper this to myself as watch the world fly by, my stomach empty and aching.
‘I’m fine’ is one of those lies we tell ourselves, right up there with ‘I’ll start tomorrow’, and ‘I don’t need to write that down because I’ll remember it’. For one reason or another everyone tells themselves little white lies to get through the day or justify whatever behaviour. I would tell myself that what I was doing was no big deal. It wasn’t at all a problem that I frequently went without eating, tried to throw up what I did eat, and had panic attacks. It wasn’t a big deal that when I eventually gave into the normal cues of my body and ate, or worse, ate something indulgent, I hated myself and had to endure some sort of punishment. That was all totally fine. Fine is one of those words that rarely ever means what its supposed to, because we’re always using it to lie.
My first day on campus I discover a veritable cornucopia, located on the fourth floor of the university library. I have never been to a university library, only the paltry collection at the local council library, and though in year twelve I will take a class at the University of Queensland where there are multiple libraries across three campuses, at fifteen this one is still compelling. Medical books are my kryptonite, and I will spend many hours pouring over the books in this library. I read surgical manuals, case studies, anatomy textbooks and physiology books on every topic from haematology to endocrinology to microbiology. As I examine the pages, with the studious work ethic of a fourth year medical student, I am doing more than just reading for fun. It’s as though I am trying to uncover some kind of anecdote to the maledictive thoughts encroaching my mind, as though the secret is hidden in these pages. Part of me is desperate to understand the body’s complex machinations so that it won’t matter what I do to myself, because if I understand how everything works then I can fix whatever happens. Deep inside is a terrible fear that what I am doing is deeply damaging, and buried deeper is the familiar yet confronting dysphoria that drives my illness. I am finding myself coming back to the same books, and keep coming across a familiar name: endometriosis. It’s a disease I’ve heard of, thanks to a book I read at fourteen where the troubled protagonist finds herself with endometriosis towards the end of the story. It does not even occur to me that this may be what afflicts me. The descriptions are violent, blood pouring, the pain brutish and unyielding. I think that I cannot have such a disease, because I function, because I enjoy moments without pain, and endometriosis seems like a disease of women who lie in bed, crippled with pain, unable to function. Yet I find myself drawn back to those books, the surgical manuals, the obstetrics and gynaecology case studies, because a part of me wonders if there’s some concrete reason for my worsening pain that isn’t just my failure to cope. The problem with my acquisitions is that I have only learned enough to pique my curiosity, enough to scare myself when things begin to feel less than normal, which only makes my anxiety worse. Knowledge begins to feel less powerful and more terrifying, but I maintain that I am fine. I am different from everyone else not in spite of her, but because of her, I will not burn out, I am stronger than that. I reassure myself, even as my breathing quickens and my heart pounds. Even as I know every word is a lie.
We do this against our better judgement, we pretend there is nothing wrong when to an outside observer things so obviously are. It is a special skill, not only for those with eating disorders, but for many women with endometriosis. So often, despite years of trying to have our pain taken seriously, we brush away those every day symptoms, we pretend everything is okay. Often times I feel that the chronicity of our disease leads to this need to show a face to the world that is well. As though our pain will only be tolerated for a certain amount of time, or that people have a finite capacity for sympathy. If we’re in pain or suffering for a little while, it’s okay, people want to understand and help; but be like that for too long and people lose patience.
Aren’t you better yet?
I felt this feeling press down upon me when I finally blurted out my secret to my teacher. Not from him, he was always supportive, and not even from my parents who I felt the need to shield from the extent of things, because I hadn’t yet grasped how deeply I was lost in my thoughts. It was this hard to describe feeling that permeated my conversations with those more removed from it. Other teachers and administrators, the guidance counsellor, there was this vague question that hung in the air when they asked how I was. They were asking with a particular answer in mind, they wanted to hear that I was better, even thought it was nowhere near that simple. So I said yes. I learnt how to give people the answers they wanted to hear because at heart I am a shameless people pleaser. I did to everyone, including my psychologist. I didn’t want her to think it was worse than it was, otherwise she might think this was full on, drag off to a program, bulimia, and might want me to go to a psychiatrist. I had ten free sessions, and as far as I was concerned, that was all the time I had. I didn’t really know how much eating disorder treatment cost at sixteen, but I knew it could be a lot. Like so many other things I told myself I would be okay, because I didn’t quite understand how much of a slippery slope my habit was. I had to be better, that was it. Everyone would be happy and things would be easier if I was better.
The Butterfly Foundation has in the last few days released the results of a survey into the financial burden of eating disorders, and the figures show that we desperately need to do better. Among the statistics uncovered by this report is the astounding figure that 1 in 3 people had to go into debt in order to treat their eating disorder. Furthermore, 1 in 4 people had to delay or stop treatment due to financial burden. These are statistics that demonstrate firmly that financial burden is having an impact on the treatment of Australians with eating disorders, delaying or disrupting their recovery, and causing undue strain on sufferers and carers during an already difficult time.
The state of mental health treatment in Australia, including access to appropriate services, is already in need of serious attention and overhaul, but these new findings highlight the impact that poor access to public funded services has on patients with eating disorders. I wonder how many people with eating disorders thought as I did at sixteen…if I don’t get better, how will I afford this? How will my family cope? Do they feel the same guilt as I did over letting their once well guarded secret seep out and ruin everyone it touches, even though it’s the furthest thing from true?
We need to do better.
Source; The Butterfly Foundation, MayDays.
Ten sessions, an hour each. My psychological treatment totalled ten hours, plus a few more spent with my GP. They were extremely helpful, and I learnt so many effective strategies that I can say I still use. But you cannot cure bulimia in ten hours, no matter how “mild” you think it is. I did so much work alone and with unlikely allies, I had so many moments where recovery seemed so much harder than just surrendering, when that voice in my head that didn’t want to go back into the cage fought me every step. There would be times where I would make it for weeks, a couple of months even, and think that I had done it, that I was okay now, only to fall down again spectacularly. I can still remember sitting in the back of year twelve chemistry after a slip up one lunch, trying to get the taste out of my mouth. My chem teacher came to stand near the lab bench, once everyone was working and talking a bit.
“You okay?” she asked quietly.
I nodded, feeling ashamed.
“Did you do a thing?” she asked.
I nodded again.
“That’s okay, this thing you’re doing, it’s like a mountain, it’s okay to go back to base camp a few times if things are hard. I’m really proud of you,” she told me, still quiet enough that no one could hear her but me.
“Thank you,” I whispered.
Those moments and those people were the reason I got better at all. They helped me to find that place inside that wanted to be rid of her, that realised the real control was beating this – I wasn’t in control at all, this disease was, and I wanted it to stop. Would having money have changed things? Maybe, I cannot say for sure, but perhaps having access to more services would have made things easier. I wouldn’t have had to pretend so much, maybe I wouldn’t have fallen back on my mechanism of control so much, maybe, maybe.
Ten hours, that’s all the time I had to do battle with a well equipped enemy, one who was prepared to weather the storm, and often felt so much stronger than me.
During my final semester of nursing school where my pain began to return, I was quick to brush it off as related to the stress of being on placement, the familiar and unwanted thoughts I began to have about not being good enough, of feeling control slip through my fingers and desperately wanting to catch it again. The thoughts were so much like high school it was frightening. It was her. Eating disorders have a voice, and even though it’s yours it feels separate from you, something to be excised and quarantined. It doesn’t matter how many years you’ve gone without throwing up, without listening to that voice, it always comes back – and whether it goes again depends on how much energy you have to fight it. I was lucky I had enough strength left to fight both it, and my endometriosis, because humans have a finite ability to cope with multiple problems, eventually your brain gets fatigued with pretending. This is high school with IV pumps and scalpels. The cage in which I trapped her suddenly seemed to have a flimsy lock, and I was terrified my anxiety would smash it open. I was lucky to find a way to keep the cage door from swinging open.
Would another ten hours have helped change that? Would fifty? I can’t say what could have been for myself, but I can say that more than ten hours will help people acutely unwell from eating disorders. More resources, less financial burden, and less strain on patients and families can make a tremendous amount of difference. It is imperative that we do more to serve this population moving forward.
This disease is not glamorous, or something to be taken lightly. It is barbaric and secretive, it means going to war with your own body without knowing whether you’ll ever claim victory. No matter how many portraits popular culture paints of young women slipping into bathroom stalls to quietly be ill and emerging, smoothing clothing and going back outside like nothing is wrong, it will never capture the brutality one inflicts on their body. For one, it’s never quiet, and two, there is always something very wrong. Making yourself vomit is not a cute personality quirk or a little problem that can be fixed in one forty minute episode and a meaningful diatribe from a boyfriend or best friend about being perfect the way you are. Food or throwing up is a symptom not a cause – there is something deeper beneath those behaviours. Eating disorders require an approach that is as different as the men and women who have them, and we can do better.
We can and must, do better.
If this post has brought up any issues for you, please reach out and find appropriate resources, see The Butterfly Foundation for more information -https://thebutterflyfoundation.org.au/support-for-australians-experiencing-eating-disorders/.