Tuesday, July 14, 2009

"Do you want to BE your disease?"

My husband asked me this question recently. It's because I'm so forthcoming about my condition with everyone, even people I just met - or never met yet (online pals). It's a question that made me stop and think. Am I doing the right thing? Is this information going to alienate my new friends, or cause them to judge me in a negative manner?

I just like to share everything, so people don't guess or wonder about me. I realized that I am secretly hoping to preemptively give people the information that would explain any strangeness about me that I expect them to encounter, eventually. With an invisible disease like Fibromyalgia, I don't want people to think I'm fine because I don't look or act "sick" during their initial interactions with me - I may not be up to the next outing or whatever, and want to be upfront about that. I'm the kind of person who doesn't like those phony "let's get together sometime" un-vitations. We all know someone who confirms attendance at an event or party and then doesn't show. I HATE that. I am the kind of person who means what she says, and I don't want any false expectations. I figure that it's only fair to others if I let them know what's going on with me right away.

My husband's got his own invisible disease - Crohn's - so
I can certainly value his perspective on this. Perhaps he doesn't like to disclose his health problems to everyone he meets because of the embarrassing nature of the worst symptoms. Although I don't mind discussing my IBS at the dinner table, I can certainly understand not wanting to tell every stranger you meet that you sometimes have to make absolutely sure that a toilet is nearby. That's not a "nice" first impression. (And yes, I also notice that others aren't so happy to discuss my IBS, either - dinner table or not. Wimps! Heh.)

His symptoms also wax and wane, like mine do, so he also appears to "not look sick" to others when he's able to be social. However he's had his diagnosis for a lot longer than I've had mine, so he knows his triggers and cycles better than I know mine. (Color me jealous.)

I think there may also be a gender component to the differing ways we view this topic. As a male, I believe he doesn't like to introduce himself to the world as a sickly person, with vulnerabilities. It's just not masculine. As a female, I don't worry too much about appearing sickly, I guess, because I don't really believe that I need to appear so strong. I do have some self-respect, don't get me wrong, but I know that society doesn't expect me to be Hercules because I'm a chick. That means that I don't really see the big deal in letting everyone know that, well, I'm not Hercules - not by a long shot. Guys - yeah, I guess they might not care to remove the doubt so early on. I can understand that.

So, do I want to BE my disease? No, of course not. I don't want to celebrate it or love it. But I do like to be clear with people. I may seem okay today, but I'm in pain all the time, even when I'm smiling. It takes a lot of effort to make lemonade out of these lemons, but I'm doing it, for my own sake. I want people to know I'm making an effort to choose to interact with them. I am tired. I'm uncomfortable. And I'm in pain. Perhaps I could be napping right now, or resting up, or making progress on some important project or chores, but I'm writing this post today because I care about you, my dear readers.

I have Fibromyalgia. I'm also a person with varied interests. I'm hoping you will not judge me too harshly for telling you the truth about me, whether it's nice or not. I just know I'm not going to hide it like some skeleton in my closet. It's not my fault that I have this challenge - it just is. This is part of who I am.