One of the hard things about having what I have is telling people in real life. For the most part, as soon as people hear the words "immune deficiency" they think of HIV/AIDS. I try to make it very clear that what I have is nothing like AIDS. Well, it is, in that they are both immune disorders, but that's where the similarity ends.
One of my deaf students asked me yesterday why I get sick a lot, and cough a lot. I explained that I cough a lot because I have asthma. (This is true, as it's one of the reasons I cough a lot. Also, asthma is something the kids can relate to- even if a student doesn't have asthma themselves, they've seen someone use an inhaler.) I also told her I have other things wrong with my lungs, but, "...the details are too long and boring." She accepted that. I like to think it's because the kids have come to know by now that, if they need to know something, I'll tell them. I also told her I get sick a lot because, "My body doesn't work right. I can't fight off infections as well as normal people can. It's a problem with my DNA, and I am not contagious." She asked a few more questions, but overall, that explanation seemed enough for her.
Most of my coworkers in my department know what my story is. I felt it only right, since they have to cover for me when I am sick. I don't like using it as an excuse, though, which is why it took me a while to feel comfortable talking about it with them; I didn't want it to be like hey, I have an excuse for calling in sick a lot.
I suppose with this blog, a lot more people know now, since I have a few coworkers as Friends on Facebook. It's easier telling people through this medium, instead of in person. I don't want pity, or sympathy, and it's easier not seeing the look of, "Wow, she's got it rough!" look on someone's face.
For those of you who have "hidden" health issues, and are greeted with, "Wow, you don't look sick!", how do you explain things to people? What's the most out there comment that you've gotten in response? (I was told, many years ago, that if I was that sick, I should be in a hospital bubble, and not out and about. The person who said this shall remain nameless, and they are not someone I associate with anymore.)