M, I'm right there with you.
My boyfriend is very loving and tries his best to be supportive; I have to give him credit for attempting to understand a very confusing disease that I am often overwhelmed and confused by myself! However, when he wants to do a lot of fun activities on a Saturday and I feel like crap I tend to suggest, “why don’t we do ONE fun activity and then relax around the house the rest of the day?”. He’ll constantly try to negotiate with me, tell me to take an ibuprofen and I’ll “be fine”, etc. He just absolutely doesn’t understand the severity of the symptoms I’m experiencing despite his best efforts – mostly because I rarely “look sick” to the outside world! It is very frustrating. The other thing is just like you said above -- you tell them you have a fever and they immediately think, oh you have a "bug!" when we know that its the Lupus. I get joint pain and muscle cramps every few days or so REAL bad, and he'll ask me EVERY TIME without fail, "what did you do to bring THAT on?" As if we're climbing mount everest in our sleep or licking bathroom door handles to get sick.
After the 100th time explaining myself I just feel like not talking about it with anyone else except for fellow sufferers anymore....I’m excited to start posting on this blog! After spending most of my life with unexplainable symptoms that no one else understands, can relate to, or wants to hear about – I’m looking forward to a little “bitch-fest” once in a while with Lupus ‘friends’ who can truly relate and understand! We all need a little empathy once in a while. Hang in there. I understand you too.
30/f California. Diagnosed November, 2011
Plaquenil, Xanex, Ibuprofen, Omega 3 complex, Iron, Vitamin D, Calcium, Cranberry