Someone once questioned me about why I always refer to lupus as MY lupus. Last night, the reason smacked me in the face.

I call it that, in order to take ownership of it. I call it that, because as much as we ‘spoonies’ can relate to each other, all of us have symptoms original to us. While many patients even take similar medications, we all have different dosages.


MY lupus is different from whoever-it-is-you-know with lupus.

Someone newly diagnosed may be better off, or worse off than me.

We are ALL different. And our lupus manifests itself differently.


Sometimes we, that is, my fellow spoonies, compare our ‘war stories’. And yes, fighting lupus IS war.

We fight for our former selves. We fight to be the super-mom, the one-who-never-says-no, the one-who-always-had-a-smile-on-her-face. But ya know what?

That person DOESNT exist anymore!

I cant do it all. I cant put a smile on my face when my entire body is inflamed.

For crying out loud, I cant even be Miss Independent any longer.

I havent admitted defeat.


And jeez, I need a hug. Dangit….someone give me a hug!

And, uh, one more thing

Oh, and I need people to stop telling me that ‘you dont look sick’

You might be trying to help…..and honestly, I do believe most of you ARE TRYING to help. But youre not.