Hi,
I find it difficult to share. That makes it sound like I flunked kindergarten, doesn't it?
In a society of blogging, status updating, and tweeting, I guess I would be catagorized as a highly private person. I find it horribly difficult to say anything other than "I'm fine" when someone asks how I am. That's a perfect answer for acquaintances, but what about family and close friends? That's where my problem lies.
What to say? How much detail? As with every other aspect of RA, it's a balancing act. Too little information, and they don't understand. Too much information and they still don't understand but will now avoid you, be uncomfortable, or even worse... be overly solicitious.
My biggest problem with all of this is that it makes me uncomfortable to talk about my pain, fatigue, and all around discomfort. And if I didn't have RA, no one would actually expect an answer besides "I'm fine." But because I have this chronic illness, people feel like they always can or should ask after my welfare.
I may sound ungrateful, but I feel like my privacy has been violated. I feel like in the name of caring, people want and expect too much personal information. I feel like as soon as someone knows I have RA, that's what they see first. And even worse, they feel like it's perfectly okay to broadcast the news! Trust me, the complete stranger in the mall does NOT need to know that I have Rheumatoid Arthritis.
So the end result is that I am back to saying "I'm fine." And if they persist? Then it's "No, really. I'm fine." I've come to the conclusion that while maintaining my personal privacy is difficult, it makes me more comfortable. And right now, I need to concentrate on making myself as comfortable as possible. And if family and friends truly care, they will simply have to understand.
Thanks for listening.
Ish
Hey Ish,
I have the same problem. I definitely feel like I'm a burdening people with my troubles (on top of the fact that I'm Scandinavian and have stoicism and stubborness at the genetic level), and because of that, sometimes I feel harried, backed into a corner, pressed for answers, etc.
I'm also trapped by a peculiar form of superstition that I've developed through the corse of my treatment. Every single time I begin to tell people how good I feel, I fail off a drug, my liver values spike, whatever. I really don't like it when people ask me how I feel and am doing really really good. I know, intellectually, that this is stupid and me telling people I feel great has no impact on my disease progression, but I just can't help feeling this way.
A while back, though, someone explained to me how much it absolutely sucks to be close to someone who is suffering from RA because they feel as helpless as we do. It is worse to know someone is suffering, but to be kept in the dark about the disease and what's going on. I get that I guess. They want to help, but can't. Actually, I think its more than 'want to help' -- I think it's 'need to help'. They already know there's really nothing they can do to help you get well, and they want to do *anything*, from cheering you up, to doing something special on hard days.
As isolated and alone as we sometimes feel, they end up feeling isolated too.
After hearing all this myself, I decided that from then on, if someone asks me, they get a truthful answer. If they don't really want to know, and are uncomfortable with the answer, they will stop asking me. Those that really want to know, get an answer they can use.
Hi,
You made me laugh with your genetically stoic and stubborn comment!
I totally understand your superstition! I have to battle with that as well. Also, if you're feeling great and you say so, then people think "Great, she's cured"! And then they don't understand why the next week (after you've jinxed yourself) you're hobbling again.
I hear what you're saying about people feeling helpless in the face of our RA.... and I agree with you. I think that's just one more thing in our daily balancing act.
I appreciate your response. You've given me several things to think about.
Ish