“How are you doing?” “How are you feeling?”
These are questions at work that I used to dread. But since I’ve “come out” at work and many of my co-workers now understand that I’m chronically ill at the very least, and some even can pronounce one of my diseases, I feel comfortable answering with an honest response. It can often take the tone of “Well, I’m feeling better and stronger each day, gaining more energy….”
That is, until recently. It seems my lupus has a mind of its own and while systemically the disease is not flaring, my skin is having a field day. If I were to follow my “honesty is the best policy” regime when conversing with colleagues about my lupus skin flare it might go something like this.
“How are you doing Kristin?”“Oh you know, my cutaneous lupus is flaring.”“Accutane-us what?” “Oh well, you see lupus affects people in different ways and in my case I have two different forms—one that affects my entire body and inner organs—and another that affects my skin. So what I’ve got going right now is…well maybe the best way to understand it is, do you watch the show ‘V’?”“The one about the lizards?”“Exactly. Where they eat the mice. That’s the one. Well, no mouse cravings here. But I’ve got these crazy rashes all over my scalp, eyebrows, sides of my face, ear canals and ear folds. And the medical establishment calls them rashes but they are not really rashes.”“Really? What are they like?”“They itch like crazy, they burn, they hurt, and well….in essence I’m molting large brown and purple scales from my head.”“Wow. Do you have fluorescent green eyes too?”
Now admittedly only the very cool, savvy friend would respond that way. Most friends and colleagues would run the other direction if I shared this latest flare with them. So I suffer in silence right now when people ask how I’m doing. Sometimes 100% honesty just isn’t the best policy my friends. You don’t want to gross people out. (I save it for the people who don’t seem to mind, like my boyfriend.)