I created this blog because I feel like I cannot talk to anyone outside of the chronic illness community about my disease, my remission or my fear of relapse (which usually occurs in the fall). It’s upsetting and frustrating not to be able to talk with even my close friends about this huge and pervasive part of my life.
photo by Volkan Olmez
When I first moved to the southwestern U.S. in 2019, I was enjoying remission for the first two months that I was there. While looking for a job and getting my bearings, I always felt stumped and almost panicked when people would ask me why I moved there from Chicago.
Do I tell them the truth?
No. Their eyes will glaze over and they won’t understand.
Then what do I say?
Be as vague as possible, or make up an easy explanation, even if it’s not true.
This is a very uncomfortable inner conversation that always leaves me feeling like I am grasping at straws while I hide my panicked expression from whoever is asking.
The Arizona experiment was disastrous. I got sicker than I think I’ve ever been and moved back to Chicago, but the questions of cross-country moves and other things followed.
I don’t want to lie, but when the alternative is to look crazy, lazy and selfish, I feel I have no other viable choice. Many in the chronic illness community have urged me to abandon my mission to get others to understand because it’s futile. They can’t understand and they won’t understand is what I am told.
I refuse to accept this. I think if we can just find the right words, we can capture at least part of the essence of this thing so it’s not such a far-flung mystery to the rest of the world. The idiocy of the name “chronic fatigue syndrome” has certainly hurt this effort beyond description. But the smirking and the sneering MUST stop!
It is very sad to me that this has not changed in more than three decades. It has completely changed the way I look at doctors and the medical profession. I will never trust doctors like I did before I developed ME/CFS.
I would love to hear anyone else’s thoughts on how they deal with questions that beckon you to bring up your illness with everyday people.
–Bridget O’Shea