Meredith Kearney: Coping through cosplay
I don't think there is any concise way of putting into words how lupus has changed my life. I can't do many things anymore. I can't work because the instability and unpredictability of the disease makes it difficult to keep a typical job.
I had my first major flare in June of 2013, which was the first sign that something was wrong as the symptoms were sudden and very serious. I suffered a pulmonary embolism and thereafter could no longer walk or stand from excruciating pain in my legs. It took two emergency room trips immediately after the flare started, and several follow-ups until I was referred by a neurologist, who found nothing neurologically wrong with me, to a rheumatologist, because he suspected my symptoms might be from lupus. I was diagnosed with lupus and Sjogren's syndrome about six months later.
Lupus forced me to give up my favorite hobby, playing Dance Dance Revolution. Dance games were my way to manage stress and feel good about myself, and it's been hard finding an alternative for it.
One of the hobbies I’ve picked up since being diagnosed with lupus is cosplay, which involves dressing up like fictional characters, often from video games and comic books. As a disabled cosplayer and disability advocate with lupus, I wanted to come up with a way to get the cosplay community involved in showing support, raising awareness and funds for the Lupus Foundation of America. So last May, I created Put on Purple (POP) Cosplay Day, on the same day as the Foundation’s POP day. On that day, cosplayers are encouraged to post pictures in their purple cosplays to social media with the hashtag #putonpurplecosplays to support those affected by lupus and in turn, get people talking about the disease.
In addition to encouraging people to put on purple cosplay, I also participated in a livestream on Twitch.TV that raised nearly $2,000 for the Lupus Foundation of America. I answered questions about lupus for people in the chat and donations let people vote on what games were played during the stream.
I use my gaming and cosplay as a platform to raise awareness about lupus, chronic/invisible illness, and disability in general, to the best of my ability and knowledge. I'd like to think that it not only helps educate people, but also has connected me with many supportive people as well.
Like Meredith, you can Make Your Mark™ in the fight against lupus. Visit lupus.org/makeyourmark to get started!
is a gamer and cosplayer who was diagnosed with lupus in late 2013. She has since used her passions and platforms to raise support, money and awareness for lupus.