No Kid Should Ever Feel Alone: Living with Cystic Fibrosis
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You know those inspirational stories about teens and kids fighting horrible diseases, but they never let their health or challenges get in the way of living a happy and full life? You sit back and think, wow, I can’t imagine what they’re going through. It must be so hard.
I think that, too. Then I remember, I am one of those kids.
I have Cystic Fibrosis. If you don’t know what that is, you're not alone. Lots of people don’t (despite the fact that about 1 in 25 people are carriers of the gene). Cystic Fibrosis is a chronic disease that impacts the lungs and digestive system. In my experience, the symptoms and side effects fall on a very large spectrum. I’ve watched friends get lung transplants (sometimes two) and still lose their battle. I’ve also seen friends get married, get their dream job, and have healthy kids of their own. It’s really all about luck.
To say I’ve "watched" these things happen is a bit of an overstatement. Fighting Cystic Fibrosis (CF) is really a lonely experience. We have a magic rule in our little community: no more than one CF kid in a room. Maybe two if the room is really big, and they promise to stand on opposite sides of it. It’s all about the transfer of bacteria and the fact that us CF kids live in constant fear of lung infections. And while I understand that this rule is valid and that everyone is only looking out for our health, that doesn’t mean I loathe it any less.
I know it sounds like a small thing, but, growing up, I had no one to talk to about my disease. Sure, I had friends and family who were supportive and were more than willing to talk, but they didn’t understand. They couldn’t. They hadn’t experienced it. So, instead of CF acting as a bridge that allows me to connect with other people who have had similar experiences, it was more like a moat, trapping me on my own little island. I could swim across it, but that was exhausting and always left me feeling stranded once I got there.
I was a smart kid, so I quickly understood what was happening. If I wanted friends, I had to leave behind my Cystic Fibrosis. So, I started pretending I didn’t have it. My denial got so bad that I stopped taking my medications and doing my treatments. Not altogether, but piece by piece, I started dropping different drugs, and eventually breathing treatments, from my regimen.
Then, almost two years ago, my parents came home with information on a Teen Council that doctors at Riley Children’s Hospital were looking to form. It was meant to be a group of teens with chronic illnesses raising awareness of teens with chronic illness. That was right up my alley.
Luckily, I was the first CF kid to get in touch with them. We had our first meeting, and only two teens showed up. But, we were confident that more would join as time went on, so we named ourselves the Riley Teen Leaders, and the rest was history.
I’m proud of the fact that I was one of the first two teens to join this group. And over the past couple years, I’ve watched the council grow into a well-rounded group with great teens who deal with all sorts of problems every day. It’s amazing to listen to other people talk about their lives and how they handle the added challenges of being sick while being a teen. It’s like a glorious group therapy session.
We do more than just talk. We also get other people talking. Each year, the council does a project. The goal is to spread awareness of the fact that teens can have health issues and that having health issues is not a bad thing.
The Council has really helped me. I have made great friends who are dealing with all sorts of challenges, which has motivated me to take my medications and be thankful for my health, because it could be much worse. It has also given me a platform to make a real difference. I get to represent CF in all our projects. I get to add my experiences to whatever we do. And if one day a CF kid sees one of our videos or art pieces and it helps them feel a little less alone, then I have accomplished my goal.
Because no kid, healthy or not, should have to feel alone.
Taylor Mattern is a student at Brownsburg High School. She was diagnosed with Cystic Fibrosis at six months old and has since involved on and off with the Cystic Fibrosis Foundation, where she sometimes speaks at events and acts as an ambassador. She also coaches soccer at the Westside United Academy, and is a member of the National Honor Society at her school.