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What I Want You To Understand About My Eating Disorder

by EllieMae


TW: This essay/rant mentions eating disorders, calories, food avoidance/restriction, and weight loss.

Yes, I have an eating disorder. This is something I cannot deny, as much as I hate the connotations associated with the label. Am I anorexic? No. Am I bulimic? No. Do I struggle with binge eating? No. Do I want to lose weight? No, I do not, I have been underweight my entire life and I would do almost anything to be a healthy weight.

“Ailah, how can you state you have an eating disorder if you don't struggle with body image?”

The truth is, that not all eating disorders have to do with adapting what we eat to change the way we look. I have an Avoidant Restrictive Food Intake Disorder (ARFID). I also have Obsessive Compulsive Disorder (OCD). I also have sensory problems and too many allergies and intolerances to count. This isn't intended to be good or flow well or be anything worth critiquing, but I want it to convey my feelings to whoever wants to read. Here's what I want you to understand about my eating disorder:

I don't tell people I have an eating disorder. It has become increasingly hard since I had a Naso-Jejunal (NJ) tube placed at the very beginning of November. An NJ tube is a thin tube that goes down my nose, and throat, through my stomach, and into a part of my intestine called the jejunum. The tube stretches out of my nose and hangs below my shoulders. There is a little port that connects to my pump, which I named Ivy. This pump allows me to eat without having to use my mouth and pushes formula down the tube, into my body. I can also take water and medications through the tube.

I get asked “What's that thing on your face?” every day. If I tell people I have an eating disorder, they think I am anorexic. They think that I am, in a way, trying to be like this. So I don't say that. I say that I need it to get nutrition. People treat me differently, as a person with a feeding tube. I always get a seat on the bus, because kind young men always stand when they see me come close, if there are no other seats left. If I close my eyes to pray, people assume I am about to faint. People tear up talking to me, “I am amazed at your strength”, even though I was in more pain before I got the tube when they treated me harshly.

I got a feeding tube because I was killing myself without it. I was dropping weight daily. My hair started falling out. I fainted multiple times a week at school. My nails never grew. I couldn’t sleep because even my bed left bruises on my bony back. My heart raced when I was lying down. I was an 18-year-old who had never had a menstrual period. All I could think about was food. But all I could do was think of reasons why I shouldn't eat. My anxiety made me scared to eat around others, or even enter the kitchen when my roommates were awake. One day, I would obsess over eating, the next, the thought of food made me nauseous. Soon, I was so afraid to eat that there were only two foods I could make myself eat. I knew that I needed help when even eating those two foods caused me to have a panic attack. I was scared doctors would label me as having anorexia nervosa. The thought that someone would think that I would inflict this torture upon myself to alter the way I looked made me sick. All I wanted was to be healthy.

I don't want to be like this. My feeding tube causes me nausea every day. My hair is falling out rapidly. Every time I touch my hair, I can easily pull out a handful of hairs. People stare. My plans had to change. Six days from now, I was supposed to submit mission papers. In my church, that means my paperwork so that I can receive a mission call, or an assignment as to where I would serve as a missionary. I am no longer healthy enough to go. If I can get off a feeding tube, I might be able to go someday though. My disorder has made people hate me and see me as a burden. My disorder has caused my family stress. My disorder has caused me 40 thousand dollars in debt in the last two months. I have cried more in the last couple of months than I have the rest of the year combined.

Lastly, recovery is really hard. Recovery means, first, that I need to be healthy enough to stop using a feeding tube. Secondly, I need to be able to maintain that health without the support. I get about 1500-1800 calories each day from the feeding tube and can receive less or more depending on how much I eat by mouth. I need to be able to eat that much, and more, on my own without it. Recovery means altering the way my mind thinks. It also means being able to push myself without getting burnt out and giving up. Recovery means learning to love myself for who I am and accept the challenges I face. There is the part of me that wants to do everything I can to get better, but honestly, it seems completely impossible sometimes, especially since I have struggled with this for my entire life. Then there is the part of me that wants to curl up in a ball and stay in bed all day, every day until no one remembers me anymore. I wish people understood that I know I can’t live like this forever. I wish they didn't act like they know my disorder better than I do. What I want you to understand is that I’m trying my best. It’s tough but I want to be strong for who I am now, and also for the little girl I used to be. 


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Stickied -- Sun Dec 17, 2023 7:36 pm
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EllieMae says...



Check out this article to learn more abour ARFID: https://rogersbh.org/about-us/newsroom/ ... bout-arfid




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Thu Feb 22, 2024 10:28 am
Coffeewriter wrote a review...



Oh gosh…even though I’ve never met you in my entire life, you really seem like an amazing, kind, optimistic person…and I’ve only met you yesterday! I’m so sorry for what you’re going through and honestly I wish I was friends with you(in real life)! With the tubes and everything I’m so sorry for what you have to go through, I have eczema, so my skin is so bad at times I can’t move my hands or neck when it dries or any part of my body. I can relate to your pain a little… but it will get better some day and you shouldn’t worry too much about money and expenses as hard as it is. Your family and friends love you as you are and you will get through this!! (It feels like I’m overstepping boundaries giving advice to someone older than me but you’ll be ok)!!! Tysm for sharing and if you ever feel upset, angry, sad come to me!! :D




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Mon Dec 18, 2023 6:54 pm
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Hijinks wrote a review...



Hi there AilahEvelynMae!

Thank you so much for sharing this essay with YWS. People can say the most stupid, hurtful things about stuff they don't understand and I think it's brave (and important) to share a personal experience that doesn't fit into other people's preconceived ideas. <3 I can't pretend to fully understand your experience, but I do know how brutal it is to hear people who know nothing about OCD make blatantly incorrect and belittling assumptions about it. It makes the actual experience of having OCD feel 10x worse, and I imagine it might be similar for you.

I'm not sure if you're looking for critical reviews or just wanted to put this out there, so I'll just share a couple thoughts/reactions I had to this piece.

You have definitely done a wonderful job of conveying your feelings and experiences to the reader. The way you've laid everything out is easy to follow, comprehensive, and does not try to be pretty. You're just stating the facts, and I think that creates a very powerful essay here. The use of italicized sentences also creates some informal organization that makes it easy to navigate the essay and to pull away the key ideas/emotions you're expressing.

I also think it's great that you talk about some of the behind the scenes parts of mental health struggles that people don't often talk about - the extreme financial cost, the physical symptoms, the loss of opportunities.

The fact that despite all of this you're still here, still trying, still doing your best, still being gentle with yourself - that is inexpressibly impressive. I can tell that this essay comes from the heart, and that makes it all the more impactful. I hope you continue to use writing as a way to express these feelings; you're very talented.

all the love to you <3
Hijinks




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Sun Dec 17, 2023 11:55 pm
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herbalhour says...



you are so strong and amazing and beautiful

also your body is so mean to you!!!

(remember to drink water and take meds)

hmm i want to punt your roomate




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Sun Dec 17, 2023 9:04 pm
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starbean says...



<333 stay strong, i'm praying for you ailah.





Tons of cowering! Plus your name in the summer programme. A custom-designed banner. A cabin at Camp Half-Blood. Two shrines. I'll even throw in a Kymopoleia action figure.
— Rick Riordan, The Blood of Olympus