This is going to be, by far, the toughest thing I have ever had to write. I’ve been meaning to make this post for years now (in fact, I had one similar to it on my previous blog… which I then freaked out and deleted). I don’t really know what is it about this, I’ve never been one to shy away from sharing personal things (often too-personal actually), but God.. This one thing.
So here it is – my eating disorder story.
I think that it’s important to state, before getting into it, that “eating disorder story” videos and blog posts are all over the internet and I in no way believe that mine is anything remarkable. Still, I feel compelled to share it. Why? I don’t know. Maybe it’s because I know that eating disorders look 110% different in each and every person who experiences them. Because of this, it often feels like you are completely alone. You read other people’s stories and find none of their experiences are matching up with your own; and when you do happen to come across someone who, somehow, perfectly articulates a way in which you have felt your entire life – the feeling is indescribable. I don’t think that there can ever be too many people talking about eating disorders, or for that matter, mental illness a whole. There is so much stigma, misunderstanding, judgement that exists within the discussion of mental illness – and this is, literally, killing people.
Take a deep breath, Erin. Here I go.
I was 6 years old when I first decided that I was too much. I wish that I could tell you just exactly what “too much” meant. I’m unsure. All I know is that I felt it.
I think that perhaps it was the fact that, for the first time, I became aware of the fact that I had a body. Now, this may seem a bit silly. I mean, we all have bodies. Duh. But I think that I became aware of the fact that I had a body that was different than that of those around me. That I was a specific height and weight, that I took up a different amount of space than everyone else (as we all do). I didn’t like the fact that I took up space – that I existed. I wanted to fold myself up, shrink down, become invisible. I felt too out in the open. Too vulnerable. Too real.
I was always an extremely anxious person. At that same age where my less-than-ideal relationship with my body began, 6, I also began to have panic attacks. I would think about dying a lot, I would think about the possibility that there was nothing there after it all, I would think about the blackness, the unknown.
I would think about oblivion.
Of course, at the time I wasn’t aware of the fact that these were panic attacks. All I knew was that I would think about these things and would lose my ability to breathe. It would feel like someone had my heart in their hands – squeezing it with all their might. I would be unable to stay still – I would have to thrash about, for if I didn’t I felt as if I would explode. I would go downstairs and tell my parents that I felt sick, that I needed help. I would sit with them and cry until the fear went away. I would go back to bed. The next night, it would happen again.
As my fear of the world as a whole grew, so did my unhealthy relationship with food. From a very young age, I associated food and eating with shame and weakness. Eating was not something that I should have to do. I feared my own humanity (which actually makes sense given my complete obsession with death and dying), I wanted it to go away. I couldn’t be human. I couldn’t. I don’t know why I felt (and currently feel) this way, but I know that my entire life has been centered around trying to deny my own humanity. I wanted to be something else – to escape the physical. Writing this, I know that I sound crazy, and I probably am.. But I know that I am not the only one who feels this way.
I remember one specific incident during what was either my 7th or 8th birthday. My family and I were sitting at my dining room table in front of a giant Power Puff Girls birthday cake. I was upset because I didn’t want my dad to cut into one of the characters’ face. My dad, being the awesome person that he was, cut the entire face of the character out of the cake and put it on a plate in front of me.
“Wow.” He laughed, “This is a really big peace of cake.”
I started hysterically crying at the mere mention of the size of a piece of cake that I was MAYBE going to eat (and probably not finish, the thing was the size of my head), left the room, and spent the rest of the night crying on the couch. I refused to eat anything.
There is this idea that eating disorders are about the physical body. That they are a disease of vanity. Let me starve myself so that I can look like XX model on the cover of XX magazine. If that is the case, how do you explain the 7 year old who refuses to eat because she is ashamed of even the idea that she would ever need to eat anything. How do you explain the 8 year old that hides the bag of carrots under the couch until everyone is out of the kitchen so that she can put them back without anyone seeing her. How do you explain the 10 year old telling herself that she doesn’t deserve to eat dinner most nights – so she skips them. Are children really that concerned about their bodies that they would starve themselves at such an early age? Because I sure as hell never once thought about wanting to look like a girl on the cover of J-14 or whatever other teeny-bopper magazine I was reading. Eating disorders are in no way about aesthetics – weight loss, food restriction.. these are symptoms of a much deeper issue.
Of course, I did always have body-image issues. If you asked me to tell you the last time I felt good about my appearance, I wouldn’t have an answer for you. I have always had a complex about my body. Again, the mere idea of being human, having a physical body, and taking up space in the world were too much for me to handle.
It’s hard to explain body-dysmorphia (which is NOT an eating disorder and deserves a post in it’s own) to people who don’t explain it. The best that I can do is say that I have no idea what I look like. Imagine that you are in one of those carnival attractions where each wall is lines with distortion mirrors. Some stretch you out, some compress you, all distort you and make you into something that doesn’t appear to be human. Now imagine if every time you looked at yourself, you saw what you see in those distortion mirrors. If every time you looked at yourself you looked completely different than you did the last time you looked. Each time, you don’t look human.
So pair body-dysmorphia with severe anxiety (that manifested in a weird relationship with food), major depression that hit me in the 6th grade, and a severe sense of needing to “punish myself” for existing as myself (because, you know, I must be the worst creature to ever walk the Earth and was obviously put here on Earth as a mistake… a tad self-centered don’t you think?) – and you have yourself the perfect ingredients to mix up a big ‘ole Eating Disorder.
While I had the characteristics of someone with an eating disorder my entire life (as most of those who struggle with them do),the summer going into my sophomore year of high school is when it all really spiraled out of control. To explain it all would take up far too much time – so I’ll try to stick to the details.
I finally decided to “really try” to “lose the weight” that I “needed to lose” to be “happy.”
I set myself a goal weight.
I hit that goal weight.
I still hated myself
Set another one.
Hated myself more.
And then I just let myself fall.
Almost the entirety of this point of my life is blacked out. I remember small flashes here and there – almost all food related. I remember the Luna bars that I brought for lunch every day. I remember having a very specific way that I had to eat them, and that I ate so slowly that often by the time lunch period was over, I hadn’t yet finished the bar. I remember when I stopped eating lunch all together.
I remember chewing pack after pack of Extra Dessert Delights Mint Chocolate Chip gum. I remember needing to chew each piece of gum for exactly an hour to “burn off” the “heaps” of calories that existed in a single piece of gum.
I remember being taken to the psychologist for the first time. Why would I need to go? I was “fine.” I was “just stressed.” I was “in control.” I remember the way that she looked at me, the slight smile that I read as patronizing. The sound of the menthol cough drops that she sucked on throughout the entirety of each session clacking against her teeth.
“Why are you here?”
“My parents think I have an eating disorder.”
“I don’t know… Maybe.”
“Well. If this keeps going, you might. But right now you don’t look like you have an eating disorder.”
I remember being cold. So cold. The kind of cold that seeps into your bones and makes your entire body cry out in agony. I remember having to get off the bus to walk home and getting right into the bath because it was the only thing to do to make the pain stop. I remember being so cold but thinking, “Hey. Shivering burns calories. Right?”
I remember being unable to do my floor exercises in dance class anymore. Every time I tried to roll, I felt like I was being stabbed as every bone in my body pressed into the hard wooden floor. Sitting in class at school became unbearable as my spine and sitting bones jutted out into the seat with no fat or muscle to protect them. My hair was falling out in chunks. My skin was yellow. I moved in slow motion. I smiled. I was “fine.” I was “okay.”
Thing is – there was a part of me that really thought I was.
I remember being admitted to the hospital. I remember the fear – the greatest I had ever experienced. I remember calling my dad from the E.R, I remember him telling me that we’d be home together soon, I remember being put in a wheel chair, I remember sleeping in a cot in the hallway, I remember waking up with to an alarm, to my I.V. having been pulled out. I don’t remember getting the I.V. I don’t remember getting the heart rate monitor. I don’t remember how I got from the E.R. to the pediatrics ward. I only remember fear. I only remember alarms going off at night as my heart rate dropped into the 30s. I only remember feeling like I “don’t belong here,” “how did it get like this?” “I’m not even that sick.”
It has now been almost 5 years since I was admitted to the hospital. I wish I could say that if fixed me, that we have a superb medical system in the diagnosing and treating of eating disorders. I wish I could say that it was just a small piece of my life that I am now over. A childhood phase that all girls go through.
To say that would be the biggest lie that I could ever tell.
Contrary to popular belief, eating disorders don’t just go away when you gain weight. In fact, they often worsen. People tend to focus on the physical aspect of eating disorders instead of the mental… Which is funny because they are, actually, mental disorders. Doing this is like focusing on weight gain or loss with depression.. The physical ailments that often accompany eating disorders are indeed serious, but they are NOT the disease themselves. They are SYMPTOMS of something much greater. In focusing on the physical and not the mental aspects of eating disorders we are not only perpetuating the stigma surrounding eating disorders, but we are also heightening the possibility of relapse (or multiple relapses) in sufferers/making it that they never get into real recovery to begin with.
One of the most upsetting and frustrating parts of being someone with an eating disorder is that unless you look like you are about to die – it is assumed that nothing is wrong with you. You gained weight and are therefore “all better.” This just simply isn’t true and often leaves the sufferer feeling more alone and isolated than ever. When you have an eating disorder, there is a constant voice in your head telling you that you are “not sick enough,” and when those around you believe that eating disorders are all about weight – that voice just goes stronger.
Eating disorders are largely diseases of addiction (particularly bulimia) and like addiction – the substance is not the main issue. Alcohol is not the cause of an alcoholics illness – they it is a combination of their biology, environment, and mental health that manifests the disease. And yes, I said disease. For that matter, an alcoholic does not simply stop being one once the sober up. Even if they haven’t had a drink in 50 years, they are still and alcoholic, still in recovery. They are still fighting with all they have each and every day to stay sober, to stay clean. The same goes for someone with an eating disorder. Only for someone with an eating disorder, they can’t abstain their drug of choice. Contrary to popular belief, humans actually need food. Quite a bit of it in fact. Each and every day. A person with an eating disorder needs to be exposed to the substance that they are addicted to (or addicted to the control of) each and every day, multiple times a day. That is hard as hell. Each meal for someone with an eating disorder is a challenge, and that doesn’t just go away. Over time, with a lot of determination and recovery, a person can learn to cope with their disordered thoughts and feelings better. They can go longer and longer periods of time without intrusive thoughts or acting on disordered behaviors – but they don’t just go away.
Eating disorders are misunderstood by almost everyone, and it’s not hard to understand why. As animals, our main instinct is for survival. When you have an eating disorder, you are literally fighting against your main primal instinct. You are fighting against what makes you an animal, what makes you a person. When you starve yourself (there are many other eating disorders and they are all valid but I am using starvation as an example here), your body will make you eat. Your animal brain will take over and FORCE you to eat. This is why people who go on crash diets often gain all the weight back and then some. Restricting food is not about control. We don’t have control over our survival instincts – people who crash diet binge because their body is trying to keep them alive.
With an eating disorder, the disease quite literally shuts off all of your survival instincts. Humans shouldn’t be able to starve themselves to death on purpose – yet with restrictive type eating disorders – this is exactly what they do. Why is this? Is it because anorectics have ungodly amounts of willpower? No. It is because they are sick. Mentally ill. They have an illness that has quite literally shut off their humanity – their survival instincts.
There is also the misconception that people with eating disorders are stupid and vain. Again untrue. People with eating disorders tend to be highly intelligent, highly sensitive, and highly competitive. That’s right, competitive. Eating disorders manifest differently in everyone, so it would be wrong of me to make a blanket statement about all eating disorder sufferers. But it is common to want to be “the best” at everything, including your eating disorder. To be “more than human.” There is no winning at an eating disorder. You either go into recovery or you die. Plain and simple.
The media likes to raise awareness for eating disorders by blaming society for eating disorders. While it is wonderful that awareness is being raised – where it is being raised to is wrong. By blaming society for eating disorders, we are trivializing them and making them out the be something that they are not. Through reading this (obscenely long) post, I hope that if nothing else, you have a slightly better understanding of what an eating disorder is and, most importantly, and how it is not about the food. It is not about weight loss or looking good or being attractive. It is not for attention. It is not a phase. It is not something that white middle class teenage girls go through. No. Eating disorders affect people of all races, ages, genders, and socio-economic statuses. Eating disorders do not discriminate. They do not only matter when a person is visibly ill. They are not never eating at all, they are not purging everything. They come in various shapes, sizes, and forms and each and every one is valid.
Eating disorders do not just go away when you gain weight. They stay with a person forever – please be sensitive to that. Eating disorders occur in people with pasts of trauma, and in those without them – in both cases they are valid.
I feel like I could go on forever. There is so much that I missed out on here, and I fear that I didn’t put enough in here to give a clear image of what an eating disorder is. I fear that the handful (if even) of people who read this will leave this with just a much knowledge about eating disorders as they did before they got here.
So let me leave you with this.
If you are someone who is struggling or believes that they may be struggling – your struggle is valid. How you feel is valid. I don’t care if you are 70 pounds or 300 pounds. If you think you need help, PLEASE. I implore you. Please get help. If you go to a doctor or therapist and they belittle your struggle or don’t believe you, find a new one. Find a support group. Please. Just get help before you are too far gone.
If you are someone who know someone who you believe may be struggling – PLEASE confront them. They may hate you, this is true, but you could potentially be saving their life. They will forgive you someday. They will thank you. I promise. It happened for me.
If you are someone who has never experienced an eating disorder, whether it be in yourself or in someone that you know – I hope that this left you with at least a speck of understanding, of compassion, or awareness, of all of this. Eating disorders are a matter of life or death – they are not vain or silly or a phase or a choice. They are a disease, and a deadly one at that.
It has been a long time since I was in the hospital, and I wish that I could say that I was doing great. That I loved myself. That I was all better. I can’t do that. I still don’t know what I look like. I still see a monster in the mirror. I still am unable to leave the house most days because I am too disgusted by myself. I still break down, often in public, because of the intrusive thoughts yelling “you’re fat! you don’t deserve to be alive! you’re disgusting! you call yourself a runner!? look at yourself. disgusting pig,” on a continuous loop in my head. I still have severe panic attacks that have made it near impossible for me to get a job without having a nervous breakdown. I still am incapable of talking to people – of making friends – of keeping friends. I am still, in my mind, failing at everything.
At the same time, I’m alive. I know that these paragraphs here sound super self-important and egotistical (probably why I saved them for the very end), but hey. Whatever. I realized something the other day – I could very easily be dead. In my mind, I died that day that I went into the hospital. I might as well have – I was pretty close to it. I believe that myself, along with all of us who continue to fight each and every day against whatever it is that consumes us. Those of us who have had every chance in the world to complete give up and collapse in on themselves but who haven’t. I believe that we owe it to ourselves, and to the universe, to keep fighting. I believe that we all have some place here – something that makes us special. Important. Crucial.
Maybe even me.
I am about to include images from when I was very sick – I find it important to share these images but I know that it can trigger some people. Please be warned.
First Day In The Hospital Now