I Won’t Apologize for Having Fun While Chronically Ill
Author: Denise Reich (Contributor at themighty.com)
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.
I dont claim any allowances but when i tell people i hace c f s they immedietly think im living off the state when indeed im living off my nerves trying to do better than yesterday some very silly uneducated people out there.
I suffer from failed back surgery syndrome (FBSS) and am on strong pain medication. I am able to and do physical activities, but limited to how long I can do them. I also suffer immensely when I need to drive to get groceries. I do not live on any social assistance, I live on insurances I paid into. I’ve been told “you look fine to me” or overheard someone say that to others! No one can understand what we’re going through and the majority who don’t are close family and friends!!
All I know now is I tell everyone I encounter to NOT have back surgery, it’s a crap shoot!
I get so tired of ignorant uneducated people who have no idea what we go through to barely exist day to day. I’m trying to remember it’s THEIR provlem & I don’t have the need (nor any respect) for their opinion, judgmental attifude and bullied negativity in my life. The people who DO know the truth & believe in me would never treat me like that. I chose to “unfriend” the haters for my own health and well-being!
I have had ME/CFS for 32 years now and recently added Fibro to my ailments. People around me know I’m sick because I rarely go out. The line I like is that though people think we’re faking our illness but when they see us out and about, it is because we are faking being normal.
Amen i do because i wnt give into to my sickness I hurt everyday n feel sick to my stomach from number of problems from fibromyalgia to ibs etc enjoy life n be happy when u can dance in the rain God bless you and yours everyone dance n be happy on good day or your or minute don’t let no one steal your joy the devil a liar n God loves u thru it all