Hello, I'm Morrison and I've been lurking for a week or so, and decided to join because I can tell after reading a bunch of your threads that everyone here really understands what it's like to live with lupus. I'm a woman in my early 40's, and I was diagnosed about 3 years ago with lupus and sjogren's. Right from the start I pursued treatment with alternative medicine and found a good Naturopath and a counselor to help me. I've had ups and downs with how I've felt during the last 3 years, both physically and emotionally. About 6 months ago I quit my job on medical advice because I was having flares and getting depressed because of the stress at work. I'll be looking for a new, less stressful job starting in january.
An important issue for me has been that my partner and family, no matter how much I educate them, don't seem to understand or care what lupus is, or how it effects me physically. My Dad will call and ask how I am, and I'll say I've been dizzy and seriously achy and haven't got out of bed for a few days, and he'll ask why. I'll say it's the lupus, and he'll say, oh, I forget you have that.
Some family members never said anything again about lupus again after I told them I had it. My grandmother, who I was close to and who recently passed away, was diagnosed with fibromyalgia and I think she is the only one who understood what this is like, because she hurt all the time. I know she had the same issues with the family as I do, and maybe my family is just emotionally desensitized to chronic pain or something. My partner and family are loving and caring and would do anything for me, and my partner has been a blessing by silently taking over some of my expenses the last few months and he doesn't expect me to start working again until I'm feeling like I want to, but it's so weird how they just seem to have amnesia about the lupus. I don't know if it's really important for my family and partner to understand all about lupus, and maybe I should just give up trying to get understanding and be happy they're there for me.
I guess it's not like a broken leg that they can see, and since I look mostly OK, and don't constantly moan, and push myself a lot through the fatigue when I get together with them, they figure I'm OK. If I'm too sick I just don't do social things.
Thanks for reading all this, and I'm glad to be part of your community now. I would be interested in hearing about your experiences in dealing with and educating your partners and families.