Friday, August 19, 2016

Truth: Why I won't Apologize for Having Fun While Chronically Ill by Denise Reich

Head over to The Mighty to read this excellent essay. Thanks to the Sjogren's Syndrome Foundation's Facebook page and the reader that posted this link.

Read it -- and then go out and do something FUN without guilt. Blow raspberries at anyone who disapproves! Unleash your version of a Bratty Inner Child Julia!

I Won't Apologize for Having Fun While 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 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. Continue reading here


Gertie said...

Wow. Great article. Thanks for sharing. Love ya! You can go out and have all the fun you want. Can I come with you?

Marion said...

Oh my goodness, this is so true! I even get attitude from family members who REALLY should know better.I just keep on keeping on.