You know, we frequently ask on the various blogs about Rheumatoid Arthritis why it is that we RAers don’t speak up about our pain and disability.
My reason is because my husband hurts for me. He’s frustrated because he can’t “fix” all of my problems. He hurts for and with me, and he lives every day knowing that there is NOTHING he can do for me. There’s no point in telling him I hurt. Or that I feel sick, or weak. He knows. I can see the knowledge and the hurt in his eyes. I don’t tell him that I am afraid – he knows that, too. We’ve talked about it, in-depth. No sense going over it again.
He is afraid to make love with me because he is afraid he will hurt me, but we work it out. He does the cooking. He helps me bathe. He takes me to doctors, he takes me to PT, he takes me to the grocery with him. We are going into our old age together – and each fears the other will die first.
I don’t talk about my pain and disability to my children and grandchildren because I want them to have their lives. Lives with as little as possible of the Spectre of Mom’s RA looming over them. Oh, they know I have RA. They know my mother died from it. They know I am getting more and more crippled, and I know they suspect the degree of my pain. They each have special stresses and worries with their families. I remember being at that point with my mother. She didn’t want to worry me with her problems, her disability or her pain. When she died, I was numb, as we usually are when someone near and dear dies from a crippling, debilitating, painful illness. I was relieved she was no longer in pain. And I have missed her every single day since she died – all 12,310 (and counting) of them.
My husband says he knew before we married that I probably would develop RA like my mother did. He married me anyway, and has taken care of me the way he knows I had wanted to take care of my mother but couldn’t (she was in a nursing home). He says it was worth it to him to be married to me – regardless of my health. I’d just like to be what passes for “normal” in our society and in our family. I want to be able host Thanksgiving, again. But I can barely “make it” through Thanksgiving as hosted by one of the children. If none of them are “doing” it, we just have a chicken – cooked by my husband.
I’m looking at the negatives – we who have this disease have to consciously focus on the positives in our lives. When I focus on the negatives, I could make myself look negative to my family – and that is not what I want. My attitude shapes me and in turn shapes those around me. So I smile a lot more than I sometimes feel like. And it seems to make a difference – in me, if not in others.
And that, too, is why I (and probably many others) try to not complain and try to look and act upbeat as much of the time as I can. It makes my family feel better – my family who know and understand me. And who love me more than I can tell, and more than I deserve.
- My Heart’s Cry (chronicillnesspaindevotionals.wordpress.com)