The Lupus Forum banner
1 - 2 of 2 Posts

·
Registered
Joined
·
300 Posts
Discussion Starter · #1 ·
Hi,

Something has been bugging me for the last few days and hoping writing about it may make me feel better.

I know I am splitting some diagnostic hairs here, but I feel like I just got diagnosed all over again for the first time...and in a bit of shock.

I have always been told by doctors that I had lupus, but it was contained to the skin and joints with some occasional muscle problems. I made it a point to say to others.. it is not systemic, no organ involvement. I just called it LUPUS.

I saw a new rheumy on Monday, and watched him write SLE in my chart as a diagnosis. When I questioned it, he told me I do, in fact have systemic lupus, based on my family history, past and present medical history and examination.

This came as a bit of a shock to me, and I feel like I just got diagnosed for the first time. It seems silly I know, even to be writing it but I feel like Im in a panic.

I have learned through the past few years that it really does not matter what you call it..as long as you can get treatment and feel better. But seeing those three little letters in black and white on my chart has really scared me and depressed me. I feel like an idiot for feeling this way!
 

·
Registered
Joined
·
4,444 Posts
I can certainly understand how seeing those three big letters in your chart would cause you to change the way you feel about your illness (even if it hasn't really changed). Once it's written down - it's right there in black and white. Now it is **systemic** as you've been told that. It probably makes it feel much more serious to you...

But keep in mind that you are still the same person. It sounds like you're staying on the same meds, and have similar symptoms still, it's only the official name that has changed. You've managed the disease successfully for a period of time, and I'm certain that you will continue to manage the disease with a slightly new name now.

Take care... (((hugs)))
 
1 - 2 of 2 Posts
Top