‘You get smaller, but so does your will to live. Your parents are watching this disorder tear you apart, layer by layer.’: 16-year-old with autism diagnosed with eating disorder, ‘It’s been so beautiful to watch myself come back’

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“I was born in 2004 into a loving family, and my childhood was pretty perfect, with lots of wonderful memories playing, smiling, and enjoying the freedom of life.

At the age of 14, I was diagnosed with Autism Spectrum Disorder. I hated sleepovers. At dinner parties, I’d much rather have sat on my mom’s lap and color, listening to ‘grown-up conversations,’ than going off and playing with other children. I would never say hi to strangers, but would instead bury my head in my mom’s arms. I’d hide my toys when someone would come over because I didn’t want them to be changed or ruined. Looking back, I realize a lot of things I faced were sensory related, but as a child, it was easier to get away with picky eating and wanting to be with my mom. It’s only now as a teenager when the struggles have appeared more.

However, at 12, things started to change. I was self-harming, feeling low and anxious. I felt unwanted, unnecessary, and stupid at school. I was ‘that’ girl, the girl who was always early for her lessons, always did her homework, and wasn’t ‘naughty.’ I was the shy one who hated speaking in front of the class and doing presentations. I’d wait in a classroom, sitting alone on my table as the rest of the class bundled up in a circle and laughed until the teacher came. My anxiety was increasing a lot because of this. I felt so out of control with things going on in my life that cutting and food became my control. But the thing is, it isn’t just your body that shrinks.

You get smaller, but so does your will to live, the size of your heart, and the function of it. Yes, you’re fading away, but so is your smile and laugh that used to bring happiness to so many people. You are dying, and your parents are watching this disorder tear you apart, layer by layer, bit by bit. So really, while you get smaller, your chances of death increase, and your time on earth decreases.

At the beginning of seventh grade, my mood was really dropping, but that was also around the time my period was starting, so it just made sense to relate it back to hormonal changes and developing. I wasn’t exactly thought of as someone who’d get depressed or develop an eating disorder. I don’t think I had issues with myself, but when I heard someone say, ‘Look at the size of xyz,’ I thought I might as well look at myself in that way. Not because I thought something was wrong with me, but because thought it was normal. I didn’t really know how to be a ‘normal’ teenage girl so I kind of just followed others and followed their lead. If they hate their thighs, perhaps it was normal for me to hate them too. I don’t believe this started my disorder though, I really don’t, but it may have been the start of talking negatively about myself and criticizing my body.

During these times, it was hard remembering my younger self. She was alive, happy, and so full of life. Her smile was genuine and her eyes glistened with hope. She had endless amounts of imagination and her little laugh radiated so much joy. Her quiet voice would never stop talking and she’d always leave a little bit of fairy dust wherever she went. She had a constant ray of light around her, she was beautiful and unafraid. No meal was too big and no mountain was too high to overcome. She was loved and she was loving. I felt sorry for her because she deserved so much more than who I became.

My biggest turning point was when I got sectioned in 2019 for the second time (I first came into contact with services in 2016) and was forced to gain weight properly and get to a healthier place mentally. Once I was discharged, my goal was, and still is, to be happy, live well, and help other people.

Being in a mental health hospital was tough. The walls were vibrating. There was screaming. There was yelling. There were howls of pain and fear. Then silence. This was an everyday occurrence, I would soon find out. D, who was psychotic, was having an incident. All I could do was sit with the others, praying for it all to end. But I made it, I actually made it after so many admissions and tears. My heart and mind were all over the place. I felt happy, scared and so sad. I have made it through the first stage of recovery. I have grown so much, not just in size, but in happiness. This has been such a difficult journey with tears and anger, pain and frustration, and endless amounts of guilt. But it has also been so beautiful to watch myself come back to me. My journey to happiness is beginning now, and I am so ready to make my life better and become stronger. It’s so hard to even think about how much I’ve changed in the past two months and it’s scary but so beautiful. This has been a tough but magical journey to being alive again. I have so far to go, but this is a huge step forward. No matter how hard things have been and will be, I am moving on

I knew weight gain would happen, but it was hard. Painful even, not just mentally, but physically. My blood pressure and pulse would go all over the place, my blood sugar levels were crazy, my face puffed up like a chipmunk, and my stomach was in agony. It would bloat more than I’d ever thought was possible. Nobody told me about the physical pain of gaining weight, and that’s all whilst dealing with the mental struggles. I watched my body grow. My thighs stopped touching each other, I could no longer count every single one of my ribs, my jawline to longer stuck out, nor did the bones on my hands. However, the hair that was falling out soon started to strengthen, my nails grew again, my eyes weren’t sunken anymore, but full of life. I didn’t exhaust myself walking 16 feet, I didn’t see a galaxy of stars when I stood up, and living no longer seemed pointless. My clothes became tighter, but that’s okay. They look better on me now, and I can buy myself loads of new clothes. I was becoming alive again. Beautifully alive.

It’s okay if your body feels foreign. Mine did, and sometimes still does. My body sometimes feels like a foreign country. New lines, marks, hills, and potholes… a different size and different language. I fled the war zoned country and arrived in a country of peace. I will take time to learn the new language, for here it is love rather than fear and hatred. I still have memories of the war written across my body, and sometimes the memories like to consume my mind, or even roll down my cheeks like a stream flowing down a mountain, but they are my history. I am ready to settle in peace and be safe, I’m ready to love my body.

Eating disorders are so much more than skipping a few meals and losing weight. They are not something you have on ‘the side’ while you still enjoy the rest of your life. Eating disorders become your life. It is numbers swimming in your mind all day every day. It’s the difference between a good day and a bad day just because of three calories up or down. Eating disorders are a loss of dignity. It’s self-hate, shame, and numbness. It is not tragically beautiful; it is a dangerous demon that makes a home in your mind and doesn’t want to leave until you’re dead. And your job is to try and kill it instead, despite it slowly killing you.

The best part of this is even after the storm, there is hope. Please know there is hope. Right now, you might say everything is hopeless, but it’s just that hope is hard to find. I hope you will be happy to be alive, to feel comfortable in your body, and accept yourself. To not be afraid of life and everything that comes with it. To find out who you really are, not what the world tells you to be. Hope is the foundation of recovery. I haven’t met anyone in recovery who doesn’t have hope, for the only thing stronger than fear is hope.

I know you have it in you to get through whatever it is that is going on in your life right now. I want you to believe in yourself. It’s all about the little things. That one time you smiled at yourself instead of cried when you saw your reflection. That moment when you sat down for five minutes and actually felt calm… like really calm. It’s about small steps just as much as big steps. Small steps every day is all you need to do, and they can be tiny. Whatever you do, don’t stay still, a footstep a day is still going in the right direction, and that’s amazing. You are healing.

To be alive is such an incredible thing. To laugh so hard your body forgets to breathe. To scream and eat and see and smell. To be alive is a miracle. It’s to have everything. It is so rare, so incredible. Your safety net, the one you know you need to break free from, feels too dangerous to even think about getting out of. But I’ll tell you what’s even worse: staying in that net and getting tangled up in it. Getting out will be one of the hardest and most exhausting things you will ever have to do, but it will also be the only thing that saves you. And remember this, keep your head held high, don’t bury your thoughts because it’ll only hit you twice as hard later in life. Your life is precious, don’t sacrifice it. You have survived every single day up until now. Even when you thought you be broken forever, you healed. No matter how hard things have been, you have moved on. I hope you truly believe you are stronger than whatever is trying to break you.

So, how to be brave? Keep going, no matter what you’re going through. Keep swimming, even if you’re sure you’d much rather drown. Keep breathing, that is brave. Really brave.”

Courtesy of Emilia Adler

This story was submitted to Love What Matters by Emilia Adler from the UK. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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