Being “The Girl with the Eating Disorder”

Editors note: This article is a guest post submitted as part of the Taboo Tab project. To learn more or to read more articles like this, please visit tabootab.com.

Body Image. Self Confidence. That voice that tells you whether you are good enough. Pretty enough. Thin enough. The voice that some how ties who you are to how you look.

Or maybe that’s just me.

Society has mixed thoughts on this one. We are almost raised to believe that everyone has body image issues, that hating your body is normal.  Dove ads may have raised awareness that we are beautiful regardless of our shape, but if you  listen closely, you can hear them whispering “everyone is unhappy with their appearance, and we’re hoping that by telling you you’re beautiful you’ll associate us with good things and buy our products.”

On the flip side, girls that publicly hate their bodies are labelled annoying and needy.  Cosmo articles warn readers to NOT mention any physical insecurities to male partners.  Girls reassure their friends by bashing their own bodies. It’s boggling.

My friends come in all shapes and sizes. That is perfectly normal to me. What isn’t normal is the attitudes about the variety. I may be more passionate and perhaps more hypocritical depending on how you look at it, but here is the story, the story that very few know.

Beauty is only skin deep, until it infects your mind.

Part One: I Go Through Hell…

I’m naturally a fairly uncensored person, except for this one thing:

I have had an eating disorder.

Where does this whole mess begin? The exact starting point is truly hard to pinpoint – these things don’t develop overnight. I can tell you when things got really bad. It was grade twelve. The details of how this came about are unimportant in this story, but I will tell you what the eating disorder took from me.

Before the eating disorder I had always said “I could never be anorexic – I love food too much.” This was naive–people may choose to diet or exercise, but they don’t choose to develop an eating disorder. Yes, choosing to diet or get healthy can be how it starts, as it did for me, but it is not cause and effect. In my experience a lot of people see anorexia as a choice, something people do for attention.  You’re just crazy.  You COULD eat if you wanted to.

Not quite.

It started so small and sneaky.  It started with “getting healthy,” and it was great at first – I felt more energetic, people were complimenting me on my efforts. I had never felt pretty, I still use the label “chunky” (What am I? Friggin’ salsa? Sour milk? Because those are the first things that come to mind when I hear “chunky”) when talking about high school Amy. Suddenly I lost weight, and people paid attention to me. That’s fine. The problem is, I was always working towards a moving target.

With each pound I lost, I found a new target. At one point, I used a friend’s weight as an exact target – something to beat. Over time, more and more rules were introduced. Suddenly I couldn’t go out any more. Why? Because going out might involve eating something forbidden. I restricted more and more, getting weaker and weaker.

A lot of people think it’s about the food. It is.  But it’s not at all. It is often about control. For me, it was control.  Stress. Coping. I was in a very dark place, and the only way I could see to survive without hurting those around me was to carefully control my food.

 My guidance counselor was the first to notice something was up. She called my mom and told her she thought I had an eating disorder. I was furious. Angry beyond angry. How dare she call my mother?!? I was PERFECTLY fine (minus the extra five pounds I just needed to lose).

I spent a lot of time angry at Ms McKinney. Especially when they hospitalized me.  Now, I have nothing but respect for her and the tough choice and the risk she took calling my mom. She saved me.

 The waiting list for most eating disorders programs is very long (think a year, maybe more depending on what level of treatment you need). My parents actually got help before I did.  As the eating disorder sunk it’s dirty claws into my life, I became more and more agitated by the day. I was awful (so was that last analogy, but stuff happens).  I was mean. I shouted at people. I rejected just about everyone. In my mind, I was hideous, fat, horrible; how dare they patronize me by loving me. I couldn’t love me.  As I waited for treatment, I went for weekly weigh-ins with my doctor. His wise advice as I slipped from a healthy weight, down 2-3 lbs a week? “Eat three squares.” (How silly of me! I am starving myself to death! Of course the solution is to just EAT! How could I have not thought of that?!?!)

My mother watched helplessly as I continued to lose weight.

I was dizzy a lot. My heart beat a funny rhythm. I was ALWAYS cold (even when it was 30˚C). I couldn’t sleep at night. I couldn’t focus. I was a good student, but suddenly I couldn’t do even the most basic assignments.

In early June, I finally reached my breaking point. I had just gotten the results from bloodwork showing that my kidneys were shutting down. I hit rock bottom. I cried and my mom, and I went to the hospital emergency room. Despite me being severely underweight and declaring that I wanted to die, I was done fighting.  I was ready for the eating disorder to take my life.

The hospital told me to “wait my turn.” There was nothing they could do for me.

One week after my graduation, I was hospitalized.   As lonely and angry as I was about the whole thing, the hospitalization meant that at least I was not responsible for the food going in my mouth. I was eating it because they told me to, not because I wanted to.

That night, and for many nights after, my heart rate dropped to just 32bpm (it had to stay above 50bpm for me to go home). I was accompanied to the shower and bathroom in case anything happened to me and to make sure I was “behaving myself.” I lost the entire summer to the hospital bed. My parents lost theirs, too. They visited me every night, and again on weekends. At 18, I was nearly out of time.

The Eating Disorders Program in Simcoe County (Royal Victoria Hospital) was only a pediatric program.  At 18, they were barely allowed to treat me. When I was in hospital, my counselors weren’t even allowed to see me. They put me in a bed and left me to stew for a few months. The nurses (most of them) were amazing, putting up with my grouchiness and playing bouncer when I was particularly angsty and didn’t want to see anyone. At the end of the summer, I was released and returned to school for a semester.

Doing well in school is awfully hard with an eating disorder.  I couldn’t focus for more than five minutes on anything but food.

A couple things happen when you starve yourself.

First: Normally, when you are completely not eating, you eventually stop feeling hungry. But when you are in a state of semi-starvation, you are hungry all the time. It’s all that you can think of.

Second: Thanks to our cavemen ancestors, your body holds on to calories, storing everything it can and slowing down everything, to eliminate all unnecessary processes. Your body fights you every step of the way in an attempt to survive, until eventually it is out of fat resources and it is forced to break down your muscles.

Your heart is a muscle. So is your stomach.

Without proper nutrition your organs shut down, there is no energy to do their work.  Then, when you are re-feeding, you have to eat massive amounts of food – we’re talking 2-3 times the normal amount of food for someone your age and height. It’s a tricky process. Often, you develop digestive problems because after starving for so long, your system is out of practice. There are medications that will stimulate your stomach muscles, because when your stomach isn’t used it gets floppy. When ED patients complain that 3 hours later they’re still full? They probably are.  Their stomach takes longer to get through things.

But enough of the science lesson.

I’ve taken you on my journey through hell, but as I am not writing this from a hospital bed or from beyond the grave things clearly get better.

Part Two: I come back again. Sort of.

 After my hospitalization, I took responsibility for my recovery.  It was hard and slow, with many a backwards slide and many fights with my mom. I saw dieticians and counselors on a weekly basis, but since my 19th birthday had come and gone, they weren’t technically allowed to see me.  Just 8 months after my diagnosis, I was out of local treatment options.

I was still really struggling.  My mom encouraged me to go into an inpatient program in the about an hour and a half away, but I had already been locked away long enough, mom, thankyouverymuch. I wanted to attend university in the fall. I had already been accepted, and I refused to give that up.

After much arguing, I finally agreed to go to a weekly group therapy in Mississauga (Credit Valley Hospital – best program out there! Shout out to Team Staab!). I actually resisted the program at one point because Staab’s name sounded like “stab.” Yeah. I was THAT resistant.

I was on the waiting list for the 16-week program, but that can take a really long time. By mid-May I was really out of time. My university dreams were slipping away.

I was angry.

I should have directed that anger at the ED, but instead I directed it at those around me. They were stopping me from pursuing my dreams, they were jealous because I was skinner than them, they just wanted to make me fat, they don’t love me. Or at least that’s what ED told me. But it’s hard to separate the voice that tells you you’re fat and unworthy and ugly from the logical and sane you. When you fight ED, he comes prepared. The ED is fighting for its life, and it does not play by the rules of good sportsmanship.

 With a mere 5 days notice, I started CVH’s outpatient program. I remember getting the call. It was a day I was supposed to have my group therapy, a Thursday, I would be leaving for program soon. I was panicked, I knew this was our goal (my parents’ and therapists’ goal, at least), but it terrified me. So, I did what any logical 19 year old does – I called my mom sobbing. She dropped what she was doing and drove to Mississauga with me.

The first few days were the hardest. I was getting used to new routines, and I thought the rules were stupid.  I cried on my first day because one of the therapists reminded me of my old dietician. I cried a lot those days though. The therapies were hard work, but the girls I met there were amazing, wonderful people that made you feel like you could do anything.

So, I lost another summer. I spent 8 hours a day at program and 4-5 hours a day in a car driving back and forth from said program. Finally, at the end of the summer, I finished. Normally, when you complete the program, you are transitioned out through a 12 week support group. I had to skip that because I was leaving for Ottawa for university in just 2 weeks.

First year is tough. Really tough. Especially if you have an eating disorder. I cried to my mom many times to please take me home. I was depressed, at times suicidal, I was done fighting this voice inside me, the constant critic. My days began to revolve around food again. I would walk around to 3 different cafeterias before deciding what to eat for lunch. But still I told no one. I wanted to be normal.

People look at you funny, like you’re absolutely bat-shit crazy when they find out you have an eating disorder. And I suppose in a sense we are a little – I can’t even count the number of times I have called myself neurotic, cried because I was afraid of satisfying the most basic human need. I just wanted the normal student experience. But I was afraid of drinking (calories), or social situations that might involve food, or missing a designated food period (a meal plan for those in recovery).   It was kind of tricky.

Things got better. 

In BIO1130 I met my boyfriend, arguing as we are prone to do, about whether or not a sumac tree was indeed a sumac.  He knows, but as far as he’s concerned I’m recovered, so he treats me like a normal person, while still being understanding of the tough days.

In second year, I moved out of my brother’s apartment.  I was on my own.   I was once again in full control of what I ate, when, where, and how. Recovery was all on me. But I had more fire power this time. I had a life. I had allowed myself to become The Girl With the Eating Disorder (the replacement identity for The Girl Whose Brother Committed Suicide). For the first time in a long time, I was trying to figure out who I was.  Between first and second year, I completed my first half-marathon with my mom and brother. I had discovered my passion for psychology. I was regaining my love of cooking (this was one of the first times I said I loved something about me – I told my therapist that I loved my ability to cook and know what ingredients would combine well).

It’s strange.  Usually, you develop your identity in high school, but I was suddenly getting to know myself at 20. And without “tooting my own horn,” I was a pretty cool person. I was far from recovered, but with each day I got better.

Part Three: Lessons Learned

Oh wait. I was supposed to make a statement about body image and insecurities. I just went on full on story mode. My story in a sense is my point though – We trash our bodies, hate them because they are not the right size or shape because society tells us we should. Because society has somehow managed to turn a number on a pair of pants or a scale into an adjective. It has managed to almost make it trendy to hate your body or bash those society seems to think doesn’t hate their body enough. So we trash and trash and trash. What happens when you trash someone enough? We start to believe it.

I learned many,  many things from my recovery. Here are a few:

1) “Toot your own horn.”

We are raised, or at least I was, to not “toot my own horn.” Don’t brag dear, it’s not polite. Other people can tell you you’re pretty, but you should not declare yourself beautiful. It’s rude.  It’s being a braggart, and no one likes a braggart. How on earth are young girls supposed to believe they’re pretty when a) we are told that we always need to be prettier (yes cosmetics and diet industries, I am looking at you…), and b) even we do feel pretty, we can’t admit it.  Suck it Covergirl. I look just fine without make-up. With each passing year I become more comfortable with who I am, and I love my body more with each passing day.

2) We should really stop and think about how cool our bodies really are.

Stop and think about it for a second. Right now.  Out for a run last night, I turned my focus away from the “Oh-God-I-am-so-out-of-shape” to the feeling of my muscles, of my joints shifting smoothly, of my heart pumping inside my chest, my lungs expanding with each breath. It is amazing, how all of that goes on without much effort to think on my own. When you go to sleep, you body takes care of you. When you want to pick something up, your brain coordinates your motions. Think about how complex the process of digestion is at a cellular level. And we’re mad because it’s storing “too much fat” or “metabolizing too slow.” Give it a break! It’s a little busy, and whether or not you like it, it knows what it’s doing better than you.

3) Eating Disorders are lethal, serious illnesses.

I didn’t always love my body as I should have. Frankly, I put it through Hell. While I was really sick, all of my organs were put under serious strain. But my body stuck by me, my heart continued to beat.

Not everyone is that lucky.

I have known people whose hearts stopped beating. I have read many a tragic tale of the lives ED claimed; usually through suicide and medical complications. Your body can only run on nothing for so long (kind of reminds me of the Giving Tree by Shel Silverstein). I have osteopenia (the early stages of osteoporosis) in my low back and hips. At 22, my bone density is in the lower 2.5% of my age group. My kitchen looks like a pharmacy thanks to the vitamins and calcium supplements I am on. And I may have permanently confused my endocrine system. When I received these diagnoses, I spent a lot of time angry. At myself. For a few years of vanity, I had destroyed my body (or parts of it). But I am nothing if not a little dramatic at times. It wasn’t for vanity, though. I know it’s not about the food. It was about control.

There was a time when I remember the eating disorder was my whole life. It was all I wanted, I clung to it. But wait, didn’t it nearly kill you? Yeah I know, it makes no sense. I think that’s the hardest part. It makes no sense. How do you explain something so horribly illogical?  It seems to boil down to a death wish. I suppose in a sense it is. On one hand, you’ve got the ED telling you that you would rather die than gain another pound. On the other hand, you are exhausted, tired of fighting, and eventually death seems like a relief – finally it is over – you won’t have to fight. Eating disorders actually have the highest rate of mortality of all the mental health disorders between the complications of starvation and suicide. The relapse rate is high, and climbs with each relapse – I have known people who have suffered for 40+ years with a demon that would have driven me over the edge had I not gotten help when I did.

4) Your weight really has nothing to do with your happiness level.

I know that it’s about much more complex inner processes, but on the surface, eating disorders appear to be “me wanting to be thinner.” Wanting to comply with this airbrushed image in magazines. Clinging to the belief that is eluded to – if you are thinner you will be happier. Let me let you in on something folks – your weight really has nothing to do with your happiness level. The fashion and beauty industry got it wrong. Not to say that if you’re overweight, losing weight is a bad thin– it is fantastic to engage in healthy lifestyle behaviours at any weight.  Just don’t expect that 5lbs to make your life suddenly more awesome. You are awesome as is.  We spend our whole lives in a society that judges appearance based on numbers. The number on the scale. The number on your jeans. The number of pounds you lost. The number of calories you ate. But they’re just that – numbers. Last time I checked, when someone asked me to describe myself, I didn’t use any numbers. I described my sense of humour, my sarcasm, my blue eyes, my love of psychology, my relationships to others, my general academic success.

5) Celebrate the small victories.

I am a million times better than I was: I think almost nothing (almost) of going out to eat, I try to eat a wide variety of foods, ignore the numbers on my jeans, and I don’t even own a scale. But I still feel like I am waiting for the ax to fall. Some days it feels worse than others – the days my jeans don’t fit and suddenly I feel like a awful worthless person; the days I ate too much and suddenly believe I am a farm animal. I have had to unlearn and relearn everything about nutrition and body shape.  I have had to tackle the cognitive distortions to see what my boyfriend and friends see. This total recovery of body and mind is still relatively new to me, and I keep waiting for the one stressor that will push me over the edge.  And so I sit and celebrate the small things – the things that maybe I don’t even notice or that people would think I was bat shit crazy for celebrating. Example? I cooked with ground beef because I forgot to buy ground chicken. I shopped at another grocery store. I ate at a buffet and didn’t develop an ulcer from the stress. I went out of the way to get ice cream. I ate ice cream in the first place. These victories sound silly to the average person, but to me they are proof that I am stronger than ED, that I have enough in my life that food doesn’t need to be my whole life.

6) Don’t believe the lies.

Oh, all the lies. We’re believing so many lies. Going through nutrition education and even first year biology and chemistry courses, you start to see the holes in the diet industries plans.

Their miracle diets don’t work.

Every single one of them is missing something.

Or they add something that you don’t actually need. The whole Carnitine thing is hilarious – based on its function, and the fact that there are a limited number of carnitine shuttles, adding more carnitine does nothing. Life lesson – just because it has a fancy science sounding name doesn’t mean it works.

My personal favourite: the “cleanses” (juice/soup/blood of a newborn… okay, I made that last one up) operate on the principle that your body even needs cleansing, or that juice will flow through your blood and clean out the toxins. Your liver and kidneys have you covered. All you’re doing is setting yourself up for a post-cleanse binge. And possibly doing more damage than good. But people cling to them. Even people who know those with EDs will cling to these miracle diets, despite thorough scientific explanations of why they don’t work and what harm they do.

7) “Diet” smart.

Any diet that encourages drastic changes to your life style is likely not sustainable and when you stop dieting the weight will return. Pick changes you can maintain and don’t be afraid to start small.

Eating healthy is good, a balanced lifestyle is fine, but I stick by my theory: there’s a reason the word Die is in the word Diet.

8) Love yourself and lead by example.

Driving yourself to madness for the sake of society’s rules is madness on its own. You are you. And you are much more than any number or size description. Imagine your best friend had an eating disorder. They are lying in a hospital bed hooked up to tubes and monitors because their heart, kidneys, and liver are shutting down. You can see their ribs, count their vertebrae, their eyes are sunken and still they feel fat. They refuse to eat. They could die. Body bashing ain’t so fun now is it? Didn’t think so. You can’t control what other people say about their body, but you can control what you say both to yourself and others. Lead by example. Love you. Because you’re kind of stuck with yourself.

So ED had taken over my life. I felt alone because I couldn’t explain my thoughts, caught between wanting to get better and not wanting to gain weight – that’s a fun request to make of your doctor. And yet here I am, 4 years after I was initially diagnosed, contemplating Dairy Queen for lunch. I’ve been in a stable relationship for 2.5 years, living on my own, training for my 3rd walking half-marathon (it was awesome guys!) and first running half-marathon. It took a lot of hard work, a lot of good doctors, therapists, and support from amazing friends (both ED patients and non) and family.

I’ve taken you through the tale of my trip to hell and back. Where does that leave us? At the healthy 4th year psychology major with a passion for half-marathons, cooking, baking, and Criminal Minds? Seems like a fair start.

[Contibuted by Amy Mason]

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