Loneliness does hurt. And so does pain. I don't know why your significant other reacts that way. Can be a myriad of things? Pain everywhere, feeling ugly, and exhausted everyday..makes sex less desirable. Depression? The constant changing and adapting ourselves to the disease(s)
Chronic of anything, that is relentless creates moods. I have many and refer to myself as Sybil. Chronic makes me cry. A headache and mild joint pain, can make me sing and leap about because it is my normal. I can tolerate it. Get a new symptom and my day goes kaput, all is ruined till I regroup and pull myself up and out of the hole.
Is she in a never ending flare? Has she ever had remission? Does she keep the faith? Does she belong to a Lupus group? In she in constant stress? Do you talk about this situation all the time? Is she informed about her disease?
Sometime when in pain we lash out at the ones we love. Been together for a spell?
Have you tried just snuggling and cuddling? Laying next to her, reading a book outloud. There as so many way to be intimante that can be fulling. Massage her aches.
Have you two had an indepth, open conversation about Lupus, her and how it affects the relationship.
I feel just because I have the disease doesn't give me a pass to be neglectful or rude to my husband. Times we both can be neglecting. Times he rubs my skin..I whine and say just squeeze don't rub. Hug my head and not my arms. Lay by me and not wait on me. I read books to him.
Reality, in pain, feeling yucky, I can't imagine anyone wanting to be $exually intimate.
Being a man, usually they feel love when s*xual intimacy is involved. Women feel loved when one shows caring by the smallest act, the smallest gift. From painting toenails, washing the dishes to writing a love letter....Usually BIG isn't what it is about...it is what comes and is expressed from the heart.
When she says you want it all the time...all the time can literally mean everyday. I guess I should ask what is your normal since you mention her response.
Maybe seek out relationship counseling. There are many books on Lupus for parents and family members, to help understand the disease. Sought any out?
I am sorry your heart hurts. Lupus affects everyone not just us who have it...be patient, be kind and seek understanding for yourself.
I have Lupus. So *^#@! what.