Having Cystic Fibrosis Doesn’t Mean Giving Up My Hobbies

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by Elizabeth Rogers |

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When you have cystic fibrosis, having hobbies is an essential part of maintaining mental health. It gives you something else to focus on and to pour yourself into, alleviating your worries and taking your mind off things, at least for the time being. But what happens when life becomes difficult to focus on hobbies or your favored activity isn’t exactly friendly to your CF?

I first got into cosplay about two years ago. Cosplay is the art of dressing up as your favorite character from a video game, TV show, book — you name it. Though it’s possible to buy a costume online or pay to have someone make one for you, I wanted the full experience. I spent hours watching videos on carving and shaping foam floor mats. I taught myself to sew and subsequently bought my first sewing machine. And then I ran into problems.

Cosplay is heavily dependent on contact cement and spray paint, both notoriously unfriendly toward people with respiratory issues. I wore a respirator (recommended for everyone) but the smells would still get to me, giving me coughing spasms and making me light-headed.

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My new hobby wasn’t wholly accessible to me, so I had to learn to work around it. I started out by asking a friend for help — a task that is still difficult for me. I hate admitting I can’t do something, but I also needed to put my health first. I also learned how to adapt my costumes to make them more friendly for my specific needs.

Quite a few costumes rely on bodysuits — one-piece leotards with long arms and legs. As someone with cystic fibrosis-related diabetes, I rely on insulin for every meal. My options were: 1. Just don’t eat, 2. Take off the whole costume to apply insulin, or 3. Find a smart way to make two pieces of clothing look like one. Costumes with belts have become a necessity for me, a way to hide that I’m wearing a shirt and pants while still looking seamless.

My hobby has both helped and hindered my health. When I’m making a new costume, I pour myself into it, spending hours and hours fully realizing the end product. I also have to work in shorter bursts than able-bodied cosplayers, reducing the exposure to toxic fumes. There’s always a way to work around it, and I’m proud of the work I’ve done as a disabled cosplayer. I’m learning to ask for help, and I’m learning to make my cystic fibrosis and my passions work hand in hand.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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