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 back to my room to read and played with other kids who were up and about on the pediatric floor. There was a girl in the next room with leukemia, and we made faces and waved to each other through our shared window. The fact that I was able to play didn’t mean I wasn’t sick enough to be hospitalized. It meant that regardless of my illness, I was a child with the same needs and wants as other children.
Yet, with adults, the same concept doesn’t seem to hold true. Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events. We’re challenged more by people we know, who should really know better.
After I became ill, I decided to go to my favorite theme park one day. I didn’t 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 on backward, slept for days to recover from my adventure, and didn’t think much of it. A few days later, my Mom called me about it. A “family friend” had seen the photo and was furious about it. She’d apparently complained to several people that if I was at a theme park, I was obviously well enough to be working and was pulling some sort of scam. It had gotten back to my mother.
I promptly unfriended and blocked the person, but their actions stayed with me. For most of the next year or so, whenever I posted a photo of myself doing anything fun, I looked over my shoulder. I always made a point of describing how sick I was and how I’d needed to rest, and how tired I was afterward. I felt the need to qualify what I was doing; to verify that I was still ill, and to remind everyone that there was more to the truth than what was visible in the photo. Someone’s ignorance and unkind judgments had made me feel guilty about enjoying my life to the best of my ability and upset my mom, and that was unconscionable.
It often seems that there’s no real way for chronically ill people to win this battle. Hostile individuals who don’t want to believe that you’re really ill will find fault with anything you do. There’s no way to appease them, regardless of how you live your life.
Some chronically ill people are able to exercise, some are not. Some of us are encouraged to be physically active in some way to help us maintain function (I have a series of physical therapy exercises to do every day to help with some specific orthopedic issues, for instance). Yet, if you’re seen being physically active in any way, it’s taken as a sign that you’re not sick after all. Society likes to applaud those Olympic athletes who fight through their illness or disability to compete. If you fight through your illness or disability to do something physical sometimes, such as a 5K or dance performance, it may be seen as proof that you’re a fraud.