Growing up rare.

January 14th, 2016, 12pm

It was -12°C with scattered clouds. The breeze was light.

I grew up with a rare medical condition so my childhood did not involve things like sleepovers or riding a bike, I honestly barely had any friends. My childhood was full of hospital beds, PICU nurses, trips to the ER, ventilators, and therapies. I spent so much time at the ER that when I went after they renovated I was able to point out everything that had changed. This is what it is like to grow up rare.

There is a special kind of lonely that comes with hospitals, I’ve become numb to it but until I read on a blog the description of having a chronic illness and I was able to pinpoint that feeling. There is nothing quite like laying awake in a hospital bed at three o’clock in the morning, the only thing you can hear is the drip, drip, drip of an IV and you have never felt so alone. I grew up with that feeling, my parents would visit me as often as they could when I was admitted but they have jobs and I have younger brothers so I spent a lot of time alone. I spent more time with fictional characters in books then with kids my own age. It was just a side effect of growing up rare.

To make matters worse, I grew up in a small city that was pretending to be a big city. So it had the biggest hospital in the province but I would be kicked out. They couldn’t take care of my needs where I lived, so I was treated in hospitals in different cities in different parts of the country I grew up in. This made life hard, this also is really common for people who live with rare diseases they often travel for health care because what they need isn’t offered nearby. Some people have uprooted their entire lives by moving to the centre’s that will treat them instead of living on the road.

It wasn’t until I was more than 16 years old to discover that I wasn’t alone in this crazy mess that is my life. Until I was 8 I had never seen anyone else with a trach and it took me even longer to find people who had trach’s for the same reason and had similar experiences to mine. It can be so isolating growing up with a rare disease, and it sucks! My friends try, I know they mean well, but they don’t get the terror I feel when I’m at a sleep lab, or understand why I am counting down the days until June of 2018. The friends that do get it, though, the ones that have my disease, even though we are so far apart and we only see each other once every 4 years. I have one friend who not only gets my crazy he can one up me. They make me know that I’m not isolated or crazy, and I’m definitely not alone in this mess. These friends, my rare friend, my CCHS friends, they are some of the best friends I could have and we aren’t alone.

Victoria and Sel said thanks.

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Mariah Hillis

History buff living with chronic health problems. Lives life to the fullest, and dreams the biggest dreams, despite not being able to breathe in her sleep.

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