Stephanie Burgis, posted on April 26, 2011:
I kept expecting a diagnosis, any day now, that would end up with me getting medicine and being cured. I never got that diagnosis, and I got more and more desperate and scared as the months went on with me continually unable to go back to work, and my employers getting more and more openly angry and suspicious that I was just making it all up.
Was this fun for me? Was I enjoying the chance to laze around enjoying my sick pay? Are you insane???
Finally the diagnosis came: guess what? There is no medicine for CFS. No cure. Just: live with it, live with the fact you can't get a day job ever again unless you have a miraculous remission.
I haven't had one. I had to quit my job (about a week before they were set to fire me for being sick too long). From now on for the rest of my life, unless a cure for CFS is invented, no matter how scared we might ever get about money (because although I was very lucky with my book advances, that was three years ago, and fiction writing is not a reliable, steady source of income), I cannot go out and get a dayjob outside the house, despite all my qualifications and abilities. I can't even take any work-from-home jobs that would require more than a few hours of work a day, because CFS affects mental energy, too.
Trust me, I do not feel happy about being helpless. NO ONE feels happy about losing their independence. Read more>>