I am in the early stages. For those who are still working; did you tell your employer? At what point?
Hi LRoland,
I did NOT tell my employer at first. When I was initially diagnosed I was doing OK-ish. But after three months I was in the midst of a full-on untreated flare and I had to say something to my (old) boss as I couldn't get up because of the fatigue that accompanies untreated inflammation. And my (old) boss was starting to get weird about it. At that point I asked my doctor for a blanket sick note: janeatiu is sick with a chronic disorder which may limit her ability to work full days, blah blah blah. My doctor worded the note in such a way that my boss knew that there was no end-point and that my ability to show up for work might be unpredictable. He also managed to convey a tone that said "deal with it" to my boss by suggesting that my ability to DO my work was not as limited as my ability to be AT work. So I was then able to do more work from home and limit my stress in the process.
I now have a new boss and I told him when he offered me the position that I had an illness which would require some flexibility. I know that I'm lucky and my boss is VERY amenable to accommodating my needs: sit/stand work station, work from home when necessary, etc. We have a moratorium on using space heaters in our very old (+100yr) building so I do now use an electric blanket at work in the winter months (there are some people without illnesses who use them year-round!). My boss reminded me recently that I have a condition that would exempt me from the space heater rule should I want to cash in that chip. I feel very fortunate to work for such an understanding boss.
Good luck figuring out the right path for you.I'm sure others will chime in with their (varied) experiences.