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To 12-Year-Old Me With Chronic Illness Whose Teen Years Aren't Going as Planned

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You think you have everything figured out and you think you know what your life is going to be. At this time you’re imagining that when you’re 15, going on 16, you will still be doing cartwheels down the halls and practicing on your homemade balance beam in the living room and blocking field hockey goals every weekend.

You imagine you will spend your high school years going out with friends after spending all day in classes. You imagine that for your Sweet Sixteen you will have a huge, very grown-up birthday party. You imagine having the same huge group of friends and ruling the school, not a single care in the world.

I’m sorry to tell you that this isn’t the case.

I haven’t done a cartwheel in years, I can hardly balance on two feet on flat ground, much less a balance beam. The flips and tricks you imagined aren’t happening. I haven’t played field hockey in years. Now I use my field hockey stick for physical therapy exercises instead of making epic passes and blocks. I am spending my high school years sick and in pain, spending more time at home than school and eventually switching to fully online school. Your abundance of friends slowly fell away when things got rough. Your Sweet Sixteen will probably be spent watching Netflix on the couch recovering from a hard flare. Maybe your stomach will allow you to eat some cake if you’re lucky.

Things didn’t exactly go as planned. You don’t know at the age of 12, but things will soon change and your life will be somewhat flipped upside down. You will spend 15 going on 16 in bed for the fifth week, using a wheelchair on the rare occasion that you get out of the house. You will have have lifelong chronic illnesses. You will have pain and sickness bombarding their way into your life. You will have more doctors than friends, and you will quickly be familiarized with the halls of children’s hospitals.

Soon you will face challenges you didn’t even know existed. You will want to give up. I don’t blame you. Your life will be hard, and trying. But I am here to tell you that you will get through it.

I am here to tell you that even though many of your friends will fall away due to lack of understanding, you will make new ones. Ones that are forever. Ones you will change the word with, all from your couch when you’re all facing daily pain head-on. I am here to tell you that you will help people and you will do some pretty great things. I am here to tell you that kindness and love will surround you and they will shine brighter than the darkness.

I am here to tell you that you might not be playing field hockey or doing gymnastics anymore, but you sure are kicking ass at physical therapy. You have found new talents and passions. You and Mom are closer than ever, and you now joke about your funny walk and doctors appointments. You are truly one unstoppable team. Your aunts and uncles and cousins will send you pictures of spoons and try their hardest to understand this crazy life you have. You and your brother Dylan will become great friends. You and your brother Owen are getting there and ultimately you are still watching out for him.

Your dad is on your side, every step of the way, he will send you spoons in the mail and sit with you while you’re stuck in bed and talk about Taylor Swift with you. And yes, you do still love Taylor Swift, it wasn’t just a pre-teen phase you were going through, no matter how much you cousins and aunts and uncles try to convince you it is. You missed a couple concerts because you were too sick, but you went to 1989. It was glorious. It felt like she played “Fearless” just for you.

There will be times when you feel unwanted and not beautiful. There will be times when you’re praying for someone to come and save you. I am here to tell you that you will figure it out and you will save yourself. You will realize that you are powerful and worthy and beautiful. There will be times when you feel helpless and hopeless — these are the times that will be followed by the most brilliant of times, even if you are in pain during them. You will learn to smile, to really smile, and laugh with you entire soul. I am here to tell you that life is going to take an unexpected turn but it’s going to be OK, even when it feels like it isn’t.

three teenage girls linking fingers sitting in hospital
Ellie (right) and two friends in the hospital.

Follow this journey on As Ellie.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 20, 2016
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