Wednesday, April 22, 2015

I'm Saving the Big Guns

Now THAT'S a gun. Public domain image found here

Guys. Some things about dealing with this disease never get any easier, do they?

Everyone, and I mean everyone dealing with autoimmune disease, probably has had been put into the crummy situation in which a choice needs to be made: do I have to explain to someone exactly how sick Sjogren's can make me? Or do I agree to a commitment for which I in all probability will not have enough energy to uphold?

I've become so accustomed to the luxury of rarely having to plead my case for limiting my activities: I know I look kind of healthy because today I actually took a shower, put on some makeup and am wearing something not my jammies; but actually I only have about two hours worth of energy for this outing. Or something to that effect. I can't think of the last time I needed to haul out that explanation for autoimmune fatigue. When I need to bow out of an event or an outing, my family and friends understand that I wouldn't fake something as nasty as this disease. That when I say I'm done for the day, or that I need to escape from the sun or when I have to lie down immediately, I'm not exaggerating. I'm not lazy. I'm just doing the best that I can. What a gift it is to be surrounded by people that understand. Sometimes I forget that there is people out there that simply don't.

Yesterday I walked into a situation in which I was asked, "Are you working?" and when I replied that I wasn't but didn't get a chance to elaborate, I heard, "Well then get off your DUFF and join the blah-blah-blah" group!"

Really? REALLY?

I suppose it wouldn't have been nice if I would have told her what to do with HER duff.

Ten years ago, I may have wasted my time and breath trying to present a non-whiney-butt description of what it means to have an invisible illness; that not all debilitating diseases come with obvious signs and symptoms. But yesterday?

Nah. Yesterday I just walked away. I figure I've got to choose my battles - and this one wasn't worth hauling out the cannons.

In all fairness, this woman who was pushing 80 probably didn't have much of an understanding of what autoimmune disease is much less something with a name like Sjogren's syndrome. And judging by my limited experiences with her, I'd guess that she really didn't mean to imply that I was a lazy good-for-nothing slug. No, she was just trying in her very gruff manner trying to recruit members for her group. And no, she wasn't being diplomatic or gently encouraging in her manner. But she meant no harm, of that I'm sure. Yes, I need to choose my battles, but this lady wasn't waging war. Heck, she probably had no idea that she had fired the first volley. I decided that I'd cut her a little slack.

Years of experience has brought me to this perspective: that I don't need to and I can't educate everyone about my own personal health issues, because there's millions and millions of people just like me walking around. There are indeed important battles to fight and a war on education and awareness to win. I'm saving my ammo for the people that are in possession of factual information yet still choose to be intolerant.

But I'm still not joining her club. So there.


Auntie Clark said...

I really needed to read this blog post today. Thank you!

Anonymous said...

Great article and I agree 100%. Thank you for your comments. You said it better than I could.

LM said...

Oh yes...I get this a lot. "Oh, you don't have to work. That must be nice." I want to say, " isn't exactly like that." Or, "I used to work, but things changed, and I won the lottery." Or, "Yes, I am independently wealthy. It is fabulous." However, I guess that wouldn't be nice to fill the world with my snark, now would it? haha So, like you, I usually just smile, nod, walk away and remind myself what happens when people assume. :)

Unknown said...

Wow! this happened to me today from a friend no less. And proceeded to compare me with others that have the same illness but still work.
Thanks Julia, I needed to see this too! I don't feel so alone after reading what others wrote here. :)