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Making It Through High School With a Chronic Illness

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It was about one month before my third year (out of four years) of high school was about to start when my symptoms got significantly worse, to the point where I ended up going to the ER because of them for the first time. I’d dealt with them before but that was the sudden peak. It started a long process of hospital visits, hospitalizations and appointments which have not ended and are likely going to be a part of my life for the rest of it. Then suddenly, one month into the school year, I found myself unable to really go to school, and after another hospitalization, I never went back there.

My life changed drastically as I managed to get myself an individual program which allowed me to study at home, learn everything myself and then come in for the tests and examinations. I didn’t have access to any online courses, and all of a sudden I felt like I was on my own – not to mention the things I’d been put through by my illness (but that is not the focus of this story).

It was incredibly difficult for me to learn to study at home by myself and even harder to come to terms with it, as I soon had to accept it wouldn’t be a thing for just a month or two, but for my remaining two years of high school. At the time I had barely any motivation to do anything other than sleep. The first months were very dark for me; being a teenager unable to go to school and on top of that living in a village away from the city of my school, I started losing friends rather quickly. I lost my hobbies and the ability to perform them, and I couldn’t go to music school anymore either – something I thought could be my future career. Due to severe chronic pain, I was losing many of the things I had. I was only ever at home, in doctors’ offices and different hospitals or taking tests at school, in order to still be able to finish high school without actually going there. I was fighting to get the attention of doctors as well as to still be able to finish high school.

While at school, everything was gradually getting worse. Not only did the kids look at me in a strange, hurtful manner, not only was I told they were rolling their eyes because they thought I was just being dramatic and avoiding school (I didn’t really share much information with anyone and nobody believed that a teenager could be in so much pain that the only option bearable for them is to stay at home) and not only did they talk about me behind my back, but the teachers also acted entitled to knowing intimate details of my health issues, commented loudly on my appearance, said things that you’d expect adults to know better than saying.

Going to school to take tests became a nightmare as I knew people were talking about me. Friends didn’t make an effort anymore and most teachers, although with possible good intent at heart, were making me uncomfortable when talking to me instead of making me feel safe. Often people don’t realize what damage their words can have, but the things I had always heard, like people being jealous of me because I could just be at home and do whatever I wanted (even though I wasn’t out with friends for months, I couldn’t do anything fun and if I did, people just took it as a sign that I wasn’t actually ill)… All that was hurting me and pushing me further away from everyone.

I thought I wouldn’t be able to finish high school. All my dreams of going to university were disappearing right in front of my eyes. And yet I am here now, about two years later from when all this really took off, and I graduated high school with straight A’s, wrote one of the best graduation works in our year, got a scholarship from my high school for good grades and went through a long circle of entrance exams after which I’ve ended up being accepted to all the universities I applied for, including my first choice university. And this feeling of empowerment I’m being filled with is something I want to hold on to and it’s something I want to share in hopes of encouraging other young girls that might be struggling.

After I stopped going to school with the others, I struggled to study. I couldn’t focus because of constant pain and the struggle felt like something I wouldn’t be able to push through. Teachers, even if with good intentions, mostly made me feel even worse by saying things like, “I don’t remember you like this! Do something with yourself!” or they commented on how sick I did or did not look every single time they saw me. The only thing anyone ever asked me about was my illness and when would I be healthy again, when would I be normal, when would I come back to school?

At one point I thought I wouldn’t even survive because of the things and pain my chronic illness put me through. It took me so much energy to actually learn how to set a schedule for myself. I had to learn to study even through pain, to develop ways to do it all by myself, without anyone explaining things to me, all the while dealing with doctors who thought a young girl could not possibly be so ill and was willingly putting herself through the struggle and avoiding school on purpose (but again, the struggle with the doctors and against sexism in healthcare is a story for another time).

Studying with chronic illness is not easy, but at last I managed to find ways that work for me. I managed to not give up – which was something I thought of nearly as often as possible. Yes, things took me much more energy and time to study for and many people I knew rolled their eyes at how much effort I put into studying, but I was not willing to give up my education and I was not willing to give up the dream of going to university. To keep my passion for literature and languages, I had to do whatever it took, even at the price of being mocked.

And at last I am here and can’t decide which university I’ll attend in a few months because I was accepted to all the ones I wanted. Even though I know it’s not going to be easy for me and my decisions are inevitably also tied to locations of my hospitals and accessibility, I don’t know what the future is going to bring.

I’m fighting limitations my illness brings every single day. This is the first time in years I’ve felt like I can still achieve incredible things as a young chronically ill woman, and it’s a feeling I’m going to hold onto for as long as possible. Since I mentioned being accepted to university and gave a short backstory in two sentences on Tumblr recently, I’ve had many chronically ill people come to me and share their stories and their success in the academic field as chronically ill and disabled woman and nothing has ever made me feel as happy as knowing how incredible we all are.

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Thinkstock photo via demaerre.

Originally published: July 10, 2017
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