I too know just how frustrating this disease can be! I was diagnosed in 1997, in the beginning I shared my story with others if asked, to be honest that got more stressful than it was worth (for me anyway). While people seemed to be interested, I soon learned they really were more nosey then truly concerned about
my health. In 1999, I started a new job, at that time I decided I was going to keep my lupus to myself, I would only share information if I had too, as far as work was concerned at that time I was functioning perfectly well and did not want to be identified or judged by my condition any longer. I still work for that company and up until December of 2007 there were only a hand full of individuals I had shared my secret with, in Dec 2007 I had to advise my supervisor as well because my disease became more active. She was wonderful though, I was a supervisor so I asked that she not share my info as I did not want to worry my employees. Long story short, in Sept 2008 I had to go out on short term disability and just have been approved for Social Security Disability. I still elect not to share my illness with others that are not close to me because most people simply don't understand. Many people close to me truly don't understand how I feel on a day to day basis. I have shared the "spoon theory" with my close family and friends and that has helped them some. You might give a copy to your co-workers and your family, perhaps this will help them relate to what your day to day is like. http://www.butyoudontlooksick.com/the_spoon_theory/
Just remember, you are not obligated to share your information with others, if it frustrates you or brings you down , don't. I lived a normal life for many years with lupus, don't let lupus define your life or become the center of your world. Being reminded of your condition everyday can do that, so be careful.
Lupus - 1997 Fibro - 2001 Sjorens - 2007 Raynauds - 2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis