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The Struggles of Being a Chronically Ill Teenager

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I don’t know what is worse: Having a common disease that is chronic, or always having to explain why I carry so many medications.

Few people notice that is offensive to say, “But asthma isn’t that bad! Could it be something else?” These aren’t reassuring comments, every month I get told it’s still the same thing. But every time someone mentions that it could be something else, panic sets in. I feel myself suffocating as I feel the pile of bricks sitting on my chest, wondering if it’s something worse. Having to explain myself to the security guard at the airport or run out of class unable to breathe is embarrassing. It’s not a stranger’s right to know my entire life story – that’s between my friends, family, and doctors. So, every time I explain myself, I find myself scrambling to put my disease into words, even though it’s so common.

My only wish is that people understood that whilst asthma is very common, people can have it so bad that they’re carrying around three medications a day just to stay alive. I may look physically well, I may live a somewhat normal teenager life by going to school five days a week, dance and band practice three days a week. But that doesn’t mean I don’t fight to be able to do this. Many days I don’t even have the energy to get out of bed. I don’t want to have to explain myself for another day or sit in the sickbay because someone decided to use deodorant around me. It’s embarrassing, and quite frankly, I can’t find the words to tell them not to. I don’t want to be the reason someone has to get made fun of in class because they stink. I don’t want that burden, so I struggle on my own in sickbay. I hate having to call my father to pick me up. He has a busy life, and he also has a chronic illness. But at least once a week, he finds himself at my school picking me up because my body doesn’t function properly.

Waiting for my body to fail me again is tedious. I’m always terrified that I’ll get sick again, that I’ll fall behind and be forced to repeat the year. I work myself to the point of making myself sick because of this fear that my body will just stop. I’m terrified that I’ll have to call an ambulance to the school because I’ll pass out in class again, or I won’t be able to breathe. It’s humiliating knowing that there’s nothing I can do about it anymore.

I spend weeks in hospitals sometimes. It’s hard being a 16-year-old, confined to a bed with itchy nasal prongs rubbing sores into her nose. Every time I get messages from classmates saying “get well soon” and emails from teachers saying “here’s what we covered,” it isolates me because I feel nobody wants to visit me. Through all my hospital admissions, I’ve had two friends visit me. It isolates me as I see them living their lives through posts on social media whilst I have the view of the playground outside the children’s ward, or the view of the nurse’s desk and blue curtains in the ICU ward. Everyone wills me to be strong through this, but when I’m carrying an oxygen tank through the school grounds or making friends with someone in a hospital, it tears me down. I don’t choose to make those friends, but when all that’s on the TV is kid’s movies, you’re forced to make friends with parents of kids and nurses. People have an assumption that every time you get sick, you’re better adjusted to it – but it destroys me.

I’m always embarrassed to explain how I eat so much yet never gain weight. I’m always sick. My body uses all my energy to keep breathing. I can’t eat that much, so when people judge me and say rumors that I have anorexia nervosa, it is so hurtful. “It wasn’t my choice,” is what I always reminded myself. But when those comments stopped, I thought everyone realized it wasn’t my fault. But then rumors started that I was gaining weight too quickly, I was becoming “fat.” I stopped eating again, it got me into a lot of trouble with my family and doctors. But I stooped to the level of believing rumors, something that I vowed I would never do a long time ago.

I always find myself thinking about amazing opportunities I’ve missed, classes I’ve failed, friends I’ve lost. Every time I fail a class someone says, “But you’re so smart? How did you fail?” It wasn’t my choice to be connected to a drip and on oxygen, trust me. I eventually learned that if someone wasn’t willing to accept that I can’t adjust to the pain of knowing everything that I’ve lost then they’re not worth being in my life.

So, whilst someone tells me to be strong, I’ve had to accept the fact that my pain will always be here – physical or mental. My illness isn’t going anywhere. Until there is a cure found for what I’m going through, the physical pain will always be there.

One thing people forget about living with a chronic illness is that feeling pain is OK. Going to therapy is OK – even recommended. For me, I find it hard to get over my sense of guilt, knowing that there are countless people going through it harder than me. But I remind myself that feeling pain is OK. Taking the time to remember we aren’t in a race to win being the sickest person on Earth isn’t a crime, it’s my way of accepting that we all go through different pain.

Getty Image by monkeybusinessimages

Originally published: April 6, 2018
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