What It's Like Attending High School With a Rare Kidney Disease


High school is often one of the hardest times in a person’s life between social changes, a larger work load, planning for the future, and most importantly, figuring out who you are as a person. Now Imagine going to high school while battling a rare kidney disease. This is what it’s really like to be a sick teenager in high school.

I am currently in the 11th grade at a high school in Toronto. I enjoy skiing, singing and spending time with my friends. I am extremely involved in community service. I am also battling a rare disease that affects only about 100 other people in the world.

Sometimes school can be tough. Your friends don’t know what to say to you when you are having a hard day. They always try their best to help you, but sometimes their help makes it worse.

Sometimes school can be frustrating because you are constantly asking for extensions on your assignments due to doctors appointments, surgeries and hospital stays.

Sometimes school can be overwhelming because you are having to deal with both school and your health. There are days when you get home and are unable to move to due pain.

Sometimes school can be stressful because you are trying to get good grades, but there are so many other problems that are crowding your brain.

Sometimes school can be painful when you are having a physically or emotionally hard day with your rare disease and the last thing that you want to do is sit in a chair for and hour and a half.

Sometimes school can be annoying when you are constantly having to explain to your teachers why you were unable to get your homework done and you use the same excuse every time saying that you don’t feel well. You’re almost afraid the teacher is going to deny your pain.

But there is so much more to school than just having a hard time.

Sometimes school can put a smile on your face when you get to see your friends. When they talk to you about the person they like for 10 minutes and catch you up on all the school drama.

Sometimes school can make you laugh when a kid in class says something funny. You, as well as the rest of the class, are almost in tears from laughing so hard.

Sometimes school can make you feel happy when your friends all come up and give you a big hug, or a teacher smiles at you in the hallway.

Sometimes school can be a break and give you a chance to focus on something else for a few hours a day. Your mind can go to so many different places and make you happy.

Sometimes school can help you understand your rare disease by learning about the human body and how the pain receptors work. You might even have a chance to share your own illness to help inform other kids and expand their learning.

Sometimes school can be special because your are surrounded by people who care about you so much and all they want is to see is a smile on your face.

And most importantly, sometimes school can be healing because no matter how hard times may get, school never changes – it is always right there for you. Your friends don’t leave. They are in that building every day waiting for you to come to class. School allows you to meet people who are true friends and are with you both in the classroom and in the recovery room. School can be hard sometimes, but no matter how hard it gets, it will never be as tough as fighting your battle. School is healing because for at least one minute out of your day, there will be a smile on your face, or a laugh, or even just a moment to escape the chaos of life.

High School has helped me persevere through both the good and bad times of battling my rare disease. Some may say that school is impossible to do given certain health circumstances, but to me, that doesn’t matter. I am going to school. I am applying to university. I am going to get a job. I am going to have a life.

This illness is a part of me, but does not define me. I will never let it control my life. School has taught me what a life worth living looks like.

I am sick. But there is so much more to me then just that. As my beautiful best friend once said to me, “Don’t let anyone dim your light.” High school has shown me how to project my light across the world for everyone to see.

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