Quote:
Originally Posted by Steve_R
I was diagnosed with Crohn's 40 years ago and have never felt any kind of discrimination because of it.  |
I wonder if your symptoms are milder or different. One example is I don’t do early day or late night meetings. I’ve heard people behind my back inferring I’m lazy and like to sleep in.
I’ve had clients ask why my skin is grey (only occasionally Grey) and part ways because they were concerned that I might not be up for the challenge) I have not missed a deadline in 25 years and I work six days a week.)
Insurance companies discriminate against me all the time.
Maybe discrimination isn’t the word. I don’t believe in shamefully hiding it. There are 750k people suffering invisibly in America with Crohn’s disease. Most people think it’s a shitting disease. For some it is. For most it’s not.
One thing I hear from patients is that they feel very misunderstood and alone in their struggle because people can’t relate or don’t give a shit.
Like when people ask “are you feeling better?” I never know how to answer. “Better than what?”
For the rest of us, it’s pain 24/7 and the occasional life threatening complication or crazy infection we can’t fight. We struggle to eat food. I don’t even enjoy food any more. Hospitalizations, doctors and more doctors, needles and more needles, cancelling social activities from fatigue.
Is a part time job managing the insurance, docs and meds. Thank god for my wife.
Some people have it milder. Mine is classified severe. It’s sometimes day to day for me.
I’ve adapted to the fatigue. I just rest when I need. I choose my own work hours. I smoke weed. (Ok, I smoked weed before).
I’m still upbeat most of the time and I’ve accepted it. I do bitch about it!
