I won’t apologize for having fun while I’m chronically ill

When I was six, I was hospitalized with Rocky Mountain spotted fever. At the hospital, I was encouraged to get out of bed, get dressed, and spend as much time as possible in the playroom. I brought magazines and books to my room to read and play with other children who were standing on the pediatric floor. There was a girl with leukemia in the next room, and we made faces and said hello through our shared window. Being able to play didn’t mean I wasn’t sick enough to be hospitalized. This meant that regardless of my illness, I was a child with the same needs and wants as other children.

However, with adults, the same concept doesn’t seem to be true.    Anytime sick people do it – well,   anything – it is considered “proof” that we are bluffing our condition. Many of us regularly deal with complete strangers when we go out in public, on everything from using parking signs to ADA accommodation on demand at events. We’re more challenged by the people we know, who really should know them better.

After I got sick I decided to go to my favorite theme park one day. I did not do much; it was a very sedentary experience. I posted a photo of myself on one of the rides on Facebook with my germ mask upside down, slept for days recovering from my adventure and didn’t give it much thought. A few days later my mom called me about it. A “family friend” had seen the photo and was furious. Apparently she had complained to several people that if I was in a theme park I was obviously good enough to work and I was pulling some kind of scam. He had gone back to my mother.

I quickly made friends and blocked the person, but their actions stuck with me. For most of the next year, whenever I posted a photo of myself doing something funny, I looked over my shoulder. I always tried to describe how sick I was, how I needed to rest, and how tired I was afterwards. I felt the need to qualify what I was doing; to check that I was still sick and to remind everyone that there was more to the truth than what was visible in the photo. Someone’s ignorance and rude judgments made me feel guilty for making the most of life and upsetting my mother, and it was inconceivable.

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