When Sara asked for submissions on the subject of disclosure to this week's "Patients for a Moment," I thought back to a post I wrote not long after I started blogging. I've always been uncomfortable talking about illness, and in it I tried to figure out why. I think I've learned a fair bit since then, so I've revised it here with the addition of some of that (very) slowly acquired knowledge.
My goal is always to strike a balance between letting people know that what I have is serious enough to affect my life, and ensuring they understand that I'm not crushed by it. But after 24 years with RA, I'm still not great at disclosing illness. I usually end up fumbling somewhat awkwardly through that initial conversation, very often insisting that, yes-I-have-RA/HCM-but-no-really-I'm-absolutely-one-hundred-percent-fine! Don't worry about me! Sure, I'll help you lift those boxes!
Whatever the situation, the realization that I'm going to have to tell somebody about some or all of my "health stuff" always looses a few butterflies into my belly. I've realized lately, though, that the people I'm disclosing to now are not the people I was disclosing to in grade school. They're grownups, and while I still get silly responses now and again, I'm no longer met with the kind of taunting I sometimes experienced as a child. Slowly but surely, I think I've begun to feel my way to a somewhat less bumpy disclosure experience.
Here are two things that make it easier:
Control. That means not waiting until I'm on the third hole, golf club in hand, and realizing there's no way I'll finish the next fifteen. (I totally had to look up how many holes are on a golf course, by the way.) It means I need to decide who to tell and tell them on my own terms, not when circumstances force me to.
Openness. I'll take curiosity over awkward silence any day. I can let people know explicitly that they can ask questions, or I can just show them I'm okay with talking about illness.
Sometimes I think I don't give people enough credit. It's true that we put up with frustrating misperceptions and inconsiderate - or sometimes just plain rude - treatment. But if I didn't have RA, would I know anything about it? Would I know the just-right thing to say to someone who had it? Probably not.
I think I've said before that it's unrealistic to expect people to know exactly what you mean when you tell them you have RA, or HCM, or any of the other reams of diseases out there. I do, however, think it's possible - and important - to make the open discussion of illness more socially acceptable. We're part of that.
If we can show people we're not uncomfortable discussing our needs and limitations, we won't just be doing ourselves a favour.