It’s a good question…. Why do I want to reflect on the good and bad of having lupus? Most of it is stuff people don’t really want to know about. You know…. When they ask, “How are you doing?” or “How are you feeling?” They don’t want to know the truth. They want a sugar-coated version of that truth.
That’s part of why I write. I can put the truth of how I’m really feeling at any given time out there and the best part is there are others across the country and world that feel the same way and reach out to me. It’s my virtual support group. (I need this because I live in the middle of nowhere in Minnesota)
These are things that my family doesn’t even want to know. Heck, they think 4 days in the hospital is no big deal and that I can jump right back into being a single mom and taking care of everything. Here in this online world, I have support that tells me to take it easy and to not fake being well for the benefit of others.
Writing is an outlet for me. It give me a place to vent my feelings and hopefully connect with others and someday make a difference. I’d love for lupus, fibromyalgia and other autoimmune diseases to get as much attention as cancer someday. You know, have huge national fundraisers that everyone’s heard of and with that, not have to explain what lupus is or what it does or why I’m sicker than so & so that they know with lupus.
My writing is like my own life story with dealing with lupus. How I feel, how it makes my family feel, and what doctors and caregivers can do to help me and others. I want to make a difference so bad, but don’t know where to start, so writing is my start… what’s yours?
A Lupie Creation 
I know EXACTLY what you mean about having to give people a “sugar coated version of the truth” to be honest I think everyone with this condition fights the same battle.
It doesn’t help you fight the feelings there and then, but it does help afterwards to know you’re not alone.
So keep writing hon 🙂
By: lizzyferret on April 8, 2012
at 8:59 pm