Sunday, October 21, 2012
Time was not on my side
I spent Friday and Saturday at an amazing training session with a group of my colleagues. It was some of the best professional development I've ever done, but it showed me the danger in putting my schedule in another person's hands.
Friday started when I woke up at 6:30 a.m. After getting ready and then an hour drive, I arrived at the hotel and was handed an agenda. A day's worth of activities (many of them somewhat physical) going from 9:00 a.m.--6:00 p.m. with an hour off for lunch and two fifteen minute breaks. Then, an hour off for dinner and two more hours of activities that ended up actually going until almost 10:30. Clearly, this was an event planned by a very healthy person.
By the time we broke for dinner, I was a mess. A friend of mine who also has health issues was in the same state, so we excused ourselves to head to our rooms for a nap during the first half hour of dinner.
Most of my colleagues know about my disease, but they'd never actually seen its impact on my life. The perception, I realized, was that I needed to use eye drops a lot and take a bunch of meds, but was basically OK. I know they didn't mean anything by it, but I was taken aback when the response to our need for a nap was, "You (pointing at my friend) should definitely take a break! We'll save you a seat." She's had surgery recently so they understood her situation, but I think they didn't know what to make of mine.
I was really grateful when my friend--who knows more about my lupus/SJS overlap than the others--clarified, "We both need to rest. It's important. Save us both seats." I think people were confused, but I was too worn out to explain at that point.
The next day started at 9 again and went through 3:30. That would normally be a manageable time frame, but I was still beat from the night before. Again, my colleagues were confused. I'm a super cheerful, helpful person, so their view of me until this weekend was that I'm high energy and always on the go.
I was a little embarrassed by the whole thing, but I think ultimately it was probably good for everyone to see an "invisible illness" sneak out to become visible for a little while. They understand me more and maybe also other people in their lives who are dealing with similar struggles.