It hurts to have Fibromyalgia in more ways than may be obvious at first glance. I believe that Fibro creates even more emotional pain than it does physical. Nothing reaffirms the emotional pain more than my husband's eyes when I see all hope crash and burn whenever he comes home and finds me still hurting.
There is always the space of a breath after he asks me how I feel where I have to make a conscious decision between confessing my pain or keeping it to myself by avoiding the question or lying. I know that if I decide to choose honesty I will see that look of disappointment and pain, and feel horribly guilty for being the instigator of those feelings.... especially when he comes through the door after work smiling and one look at my tear-stained face wipes the smile off his for the rest of the night. There is no way to deny that I am the cause of his pain, even if I'm not causing it on purpose. There is no way to deny that my Fibromyalgia ruined his happy. How can I not feel guilt at this?
Sometimes I've been in a flare for so long that when I tell him that I hurt, his only response is “What's new about that?” That's as hard to deal with as the look in his eyes. It forces me to remember how much time we have lost with each other because of the pain or fatigue. I know that his anger isn't directed at me, but at the disease... but I still feel the guilt for being the host of the disease.
If I choose to try to protect him from the truth I will pay a heavy price for the strain of trying to carry the lie... and in the long run, I most often fail miserably. The fact is that the better job I do of hiding the pain, the higher the price I will pay, the longer I will be paying, and the sooner I will have to pay it. And I usually try to hold on too long.
On my husband's birthday I held on as tight as I could, determined to make it special for him and not let my Fibro kill yet another BBQ. That night I broke down and the pain I'd been pushing away caught up to me like Arnold's secret son. It's a good thing the next day was Mother's Day and he had already planned to wait on me hand and foot, because he probably wouldn't have had much of a choice. That flare ended up lasting two weeks and making my husband pretty damn ticked I stressed my body out that badly... and making him feel guilty that I cause myself pain for him.
The really sucky part is that no matter what I choose, we are both going to lose. If I tell the truth, he's unhappy, and I feel guilty, and then he feels guilty because I feel guilty. Or I don't tell the truth, and I'm inevitably caught, making him feel guilty for making me feel like I have to lie, so I feel guilty, and so on, and so on... until we're both just walking people-shaped sculptures of misery and guilt... alternately sharing our feelings and then keeping them secrets... and keeping the cycle of guilt and frustration going.
I know what's probably going through some of your minds, because I've had those thoughts too. I'm the one that's sick, he should be extra careful not to upset me and stress me out further.... he needs to keep a tighter lid on his emotions and he has no right to be angry..... WRONG!!!!!!!!
No one ever grows up saying "I want a sick wife, a pretty much nonexistent sex life because she hurts too badly to make love, to go to work every day while she lies in bed popping pills and then to come home and take care of her, a kid or two, cook dinner, put them all to bed, and try to find the energy to clean up after holding basically 1 full time and 3 part time jobs... while never having any money to spend on myself because all the extra ends up going to medical bills.”
I am not the only one that saw my future darken with my diagnosis. He may not feel the physical pain of Fibro, but he feels the emotional toll of it as deeply, if not deeper, than I do. He is even more isolated than I am... because who really understands what he is going through? I at least have support groups and friendships with women in the same situation I'm in. Like most men, he feels a strong responsibility to protect and take care of his family, but there is no way he can protect me from my own body. He can't fix me... and each moment is another reminder that he's failed to keep me safe.
He tries so hard to hold in his frustrations. I am in awe of that strength... I don't think I could do what he has done for me over the course of our relationship. He is an amazing husband, a wonderful father, and a fantastic friend. He is an amazing caretaker and nurse. But his guilt is tangible when he reacts sarcastically or with anger to my pain.... Or when he "allows" me to push myself too hard.... Or when he knows that I caught that heartbroken look when he gets home from work and asks how I'm doing and I am not able to tell him I feel amazing.... Or when he's massaged me for so long his hands hurt and he has to stop.... Or when I tell him there's nothing he can do. And I think that that's a big problem... because it's totally okay for him to have those feelings. It's human, and it shows that he cares about me... because if he didn't he wouldn't get so upset.
But we can't live like this. I can't lock myself in the bathroom with the shower running to cover the sounds of my sobs when he gets home, like I did only days ago. I can't continue to have warring emotions when he comes home... part of me desperate to see his beautiful hazel eyes smiling at me and feel his arms around me in a tight hug, but the rest of me knowing that what I will actually see is those eyes darken in disappointment when he realizes that tonight will be another one where he is unable to relax. He needs to be able to express his feelings about my illness and what my being sick means for him. And we need to stop keeping our negative emotions secret and bottled up.
The only way to fix things is to really focus on communication. Maybe over sharing would be beneficial for a while, until we get used to not bottling up. Maybe if we let it out, it won't really be a big deal anymore... and we'll be on a better track to individual and marital health. I know that if we don't, Fibromyalgia is going to drive in a wedge that may never be able to removed, and I find that to be completely unacceptable.
How do you all keep your relationships healthy? I know both Brandi and I are eager to hear what works for others.