Wednesday, December 10, 2008

Simple Semantics

Ever thought about the difference between saying, "I have a chronic illness" and "I am chronically ill"?

I never gave it much thought either, but something I read (I can't recall what exactly) caught my eye in a recent Arthritis Today issue that made me contemplate the difference and how the two phrases relate to my relationship with Lupus.

For the first few years after I was diagnosed, I always referred to the disease as "my Lupus." If someone asked how I was feeling, I'd say, "my Lupus is crummy" or "my Lupus is fine today." If I couldn't make plans because I was flaring, I'd blame it on the fact that, "I don't know what my Lupus is going to do today." It was as if the disease and I were one integrated unit, joined at the hip for the foreseeable future. I was unable to separate myself from it. It's no wonder why - I had to consider the affects of the disease with every move I made. Literally. And when you're flaring, there's hardly anything else you CAN think about. So at that time, I definitely thought of myself as "chronically ill" - overwhelmed by the disease, and consumed by its presence in my life.

But fast forward to today, where the disease is quiet and relatively trouble-free. It's still a consideration, of course, since I still take medication for it twice a day and have to negotiate my nap and activities to make sure it stays dormant. But I rarely talk about "my lupus" anymore. When I do, it usually refers to a time in the past, a time when Lupus played a much larger role in my daily thought process. And it's not just because the disease isn't active; it's because I've been able to separate myself from it - becoming my own person again, despite Lupus.

Today, I certainly don't think of myself as chronically ill. Sure, I have Lupus. But Lupus doesn't have me.

2 comments:

Kelley said...

Hi there. I happened up on your blog via a google search. I am being tested for lupus. I've never known anyone with lupus so I have felt very alone and frustrated. No diagnosis has been made yet, but I hear that it is normal to not know for awhile after it's suspected. I am enjoying your honesty. It's nice to read about someone who is dealing with it instead of it dealing with them. I have told my family and friends if I have lupus I refuse to let it have me. Right now I'd just settle for a diagnosis.

Sara Gorman said...

Sometimes getting a diagnosis is the hardest part of the whole process! Hang in there - and know that you're definitely not alone...anytime you need reassurance of that, stop by and let me know. I'd be glad to share my story. Thankfully, it has a very happy ending, so know that there's hope. :)