What Sjogren's Feels Like

Lulu understands. 

While I was visiting Mom in the hospital last week, she made a point of telling one of my cousins about my autoimmune disease. Which seemed kind of surreal - here is Mom dealing with a major stroke and worrying about my Sjogren's syndrome. So typical.

Anyway, my cousin looked at me and asked more about Sjs. We had moved out of Mom's room and into the patient lounge so that Mom could rest. Carole seemed sincerely interested and so we chatted for quite awhile about autoimmune disease. Later in the discussion, she said, "So, I know this might sound weird, but, how do you feel? What does this make you feel like?"

Hm. Great question, I thought. But we were having this conversation following a night with little sleep, a great amount of anxiety, and a long flight crossing two time zones. And my energy reserves still hadn't been replenished after the Thanksgiving hoo-rah. This question required me to utilize more than a few functioning brain cells and I wasn't sure mine were cooperating.

I hesitated before answering. Carole looked at me expectantly. She wasn't going to let me get away with a non-answer. We knew each other too well.

We had already talked about the dry eye and lack of saliva things, so I tried to explain some of the more general sensations.

"You know how you feel when you're just beginning to get sick with something? How your whole body aches and you feel shivery - like you might be running a temperature? How loud noises bother you and you can't seem to focus on anything for any length of time? And you feel as though you have no energy and just want to sleep for days on end?"

She nodded.

"Well, since my immune system is on overdrive, my white blood cells think that they're attacking some kind of invader, just as though I was coming down with the flu. Except, I'm not getting the flu - my white blood cells are attacking me and my normal cells. But I feel as though I'm getting sick. Constantly.

Some days are better than others. Some are much worse, and those days are when I'm in a flare. But if I get lots of rest, and take my meds, and pace myself, I get by."

We moved on to other topics, and I was somewhat relieved.

It's hard to put someone else inside your skin - to try to describe life with autoimmune disease. But I was touched that Carole sincerely wanted to know.