Lupus after Diagnosis. Feelings of Vulnerability. Do they go away?
Exposed. That's the way I felt when the appliance repair man asked me to empty out the contents of my freezer. 😳
We run a pretty neat and tidy household. But my freezer, while not being overloaded, has been overlooked these last few months. I pulled items out, and slapped them onto the counter as he looked on, feeling more vulnerable as I went. Who knew frozen corn and old popsicles could do that do a person?
But I do remember those feelings of vulnerability and even embarrassment when I was first diagnosed with lupus. Being poked and prodded in places I didn't know existed was unsettling. I didn't like divulging all the symptoms I was having, describing in detail the wacky ways lupus affected my body. I also resented the fact that I had to recount all this to intake people, nurses, doctors, and lab techs, none of whom I knew, but each of whom knew ALL about me.
It's a very difficult time, the beginning. But then, a strange thing happens. Over time, you start to see how honesty and openness with your healthcare team enhance your appointments. You gain confidence in rattling off your symptoms. You come to know every inch of your body, and willingly point out when changes have occurred, especially when they are overlooked. You talk candidly, and forget nothing. You prepare notes on it all, and recruit a friend or spouse when you need backup.
After a certain point, you speak up in appointments with a degree of certainty you didn't know you had. You are in command at the pharmacy. You advocate for yourself without thinking twice. You correct your medical team when they are mistaken. You talk knowingly about your disease. You take on the insurance company like it's nothing. (Well, not NOTHING. But at least you learn how to spar!)
The confidence gained doesn't necessarily make things easier, but it does change how you think about yourself. You realize you are capable, relevant, and proficient. I'd even add accomplished. And experienced. And successful. .
If you are living with lupus, having navigated the world of a chronic illness for even one day, you are all of these things. Don't let vulnerability or feelings of exposure fool you. You are doing amazing things. Keep it up!