I posted my blog on Facebook for the first time yesterday. I hadn't done this before because I wasn't sure how others in my life would react- with pity? Annoyance, at me being all "look at me with my weird illness"? Indifferent?
Response so far has been overwhelmingly positive, so thanks to everyone for their support.
This has been easier than it usually is telling people about my health woes in real life. Reactions tend to fall into the following categories:
1. Shock: "But you don't look sick!"
2. Nodding: "Oh, it's like AIDS, right? How did you get it?" (Which, as I have said before, it's really not.)
3. Confusion: "But...there's got to be some kind of medicine to make you better."
4. Awe: "You are so strong. I could never do what you do."
All are well-meaning, and I do appreciate the concern. But I sometimes wish I had something common and quantifiable. If a person is deaf, people get that, and you can even show them an audiogram to prove it. If a person has Down Syndrome, you can see the genetic malfunction. If a person is blind, or has hemophilia...you get the idea. My problems are so far outside the normal experience of pretty much everyone that, when I do choose to "come out" about my health, I end up getting into a much longer explanation than I'd like. (I experience the same thing with my son's Sensory Processing Disorder.) I am also no longer surprised by the number of medical doctors who have never heard of any of this, and whom I've had to explain it all to. (I'll have to blog sometime about how, when I was in college and went to Health Services for a sinus infection, they insisted on getting a chest x-ray from me. They then looked at it and freaked, because they thought I had tuberculosis. Yeah, that was fun.) I'm not someone who really enjoys being the center of attention in real life, so having to explain the whole thing is way more attention than I usually want.
If I had to name the thing that bothers me most about having a Primary Immune Deficiency and Bronchiectasis, it is this: being different. Being sick a lot does suck as much as it sounds, and coming thisclose to dying was no picnic, but I seldom am able to just blend in with a crowd, and be like everyone else.