How Cosplay Changed My Life With Chronic Illness
“Wow, I love your costume. That must have taken so much time. You did a great job!” That was the first compliment I ever received at a convention, and it was in the elevator of the parking garage. It was the first time in over a year and a half that no one looked at me with pity. I wasn’t that poor girl in the wheelchair; no one was checking to see if my legs moved and then quietly judging me because if my legs can move I should be able to walk, because isn’t that how it works?
No, I was just another nerd in a sparkly, colorful fairy costume — not the sickest person anyone had met, not the person everyone has to worry about, not even the girl who had finished a month-long hospital stay due to mysterious onset paralysis only a week before. I was just a regular nerd in a whimsical fairy cosplay (costume play). From that moment on I was hooked.
See, I’d been creating my own costumes and dressing up far before I realized it was actually considered cosplaying, so that wasn’t it. It was the community that drew me in. They accepted you without needing to know you; just the mere fact that you were there, that we shared similar interests, fandoms, the love of cosplay, that’s all that they needed to know. I was surrounded by unique, talented and interesting people, and for once, I didn’t have to be be the “sick girl”; I could just be myself. In a time when everything had to be about my illnesses, health, safety, the ever-looming debt that medical issues cause, I was actually able to take a break, take a breath and enjoy. But it wasn’t just any break — that day I fell in love with something that somehow felt bigger than everything else I’d been going through. I fell in love with cosplay.
Cosplay utilizes almost all of my skills and hobbies, such as makeup artistry, which was what I’d planned to do with my life before that world was shattered with a few mere words from a doctor. But the biggest draw is the creative aspect of the design in general. I’ve been reading, watching and acting out everything I’ve could get my hands on since I was a kid. Now I had something to occupy my time with; if I had any energy, I was either cosplaying or writing. I knew it was harder for me because of my health, but I knew I’d get it done in the end. Suddenly life didn’t seem so bad because I had something to do with it. It’s far more than just a simple pastime for me — cosplay is a gift that keeps on giving.
Cosplay also gave me a platform to achieve my ultimate life goal. I could spread awareness about illness, lives of the chronically ill and my opinions on how people should just be kinder to one another. Somehow, beyond my wildest dreams, this was incredibly well-accepted. It turns out there are so many more cosplayers with chronic illnesses than I realized. Every time somebody told me they needed to hear some uplifting thing I said that day; or commiserated with fellow Spoonies about the difficulties that we face; or when somebody healthy suddenly understood a little more about chronic illness as a result of my efforts, I was reminded of my purpose.
My goal in life is to change the world, to shape a future where 12-year-old girls aren’t thrust into this ugly world of ableism and medical neglect and mistreatment, where diagnostics will take weeks instead of years. I also wanted to put a smile on people’s faces and remind them they’re not alone. I honestly thought this process was going to take a lot of paperwork and hard work on my part; I never considered that I could fully enjoy each step of the process. Cosplay came around, and not only am I spreading awareness, I’m having a blast, too.
I have quality of life, or at least a semblance of one, because of cosplay. So thank you to my friends for their amazing support. I promise I’ll be cosplaying for a long time.
Follow this journey on the Chronically Cosplay Facebook page.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to email@example.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.