A reader's comment on a previous blog post deserves attention and the good thinking of other readers. I post it here, and share my thoughts underneath:
"I am now in my 4th year of suffering with RSD pain. I have no family in my state. My husband started out somewhat supportive & helpful. Now he sees me as a setback to the things he wants to do. He has told me that he doesn't drag race, go to metal concerts, and other things he enjoys b/c I make him feel guilty for enjoying his life. I have one daughter that is away at college. Only one close friend. Basically I don't have a support system. Spousal support is the most important thing one can have when trying to overcome the pain of this illness. What do you do when you don't have it? We are only days away from our 24yr anniversary & I'm feeling like its time to let go. I don't want this feeling of being the cause of his misery and him the cause of mine. Any advice on how to make it through a divorce when you're so weak and beat down? We would have to stay in the same house until the market is better for selling the home."
My Thoughts:
Divorce is the best solution in some situations -- especially when there is the presence or threat of emotional or physical violence. But divorce is hard, especially on women. Hard socially and hard financially.
Sometimes divorce becomes the visible option, something concrete to talk about, when the couple has a hard time talking deeply and authentically, without shame or blame, about the issues that lie beneath the divorce talk: resentments, jealousy, depression, rage, loneliness, fear, sex, and more.
If you'll permit me to speculate, I can imagine that you and your husband can get caught in a self-defeating loop (as many other couples do). You can't help having an illness that limits your activities. He feels obligated to curtail his activities and then resents you. You feel guilty and depressed, which probably exacerbates your RSD and leaves you more pained and less physically able to participate in activities with him. He gets resentful, and you get guilty, etc. etc. You naturally think about ending the relationship to end the hurtful pattern.
I wonder if there may be ways to intervene in this cycle, short of divorce (which is always an option). And I wonder what you have tried already? One thing to keep in mind is that you have an illness, but you are not your illness. There is a you that is much bigger than your symptoms and the things you cannot do. It's probably that "you" that your husband fell in love with. I wonder if you can tap into that "you" and find aspects that take you out of guilt (and your own resentments) and reach out to him from your core, your essence. Perhaps there are ways for you to introduce both of you to just being together and to engaging in activities that you can tolerate (and giving each other permission to also engage in solo activities).
Another perspective: When illness enters into the couple relationship, things change, often drastically. When we continue to apply pre-illness approaches to our changing reality, they often don't work and frustration and disappointment result. Couples can wind up blaming each other instead of joining together and lamenting the losses illness has caused both people. (and at some point, some couples wind up appreciating the unforeseen "gifts" illness brought into their lives -- e.g. having to slow down and learn to communicate). I wonder if there is a way for each of you to stop (if only for a moment) seeing the other as the cause of your own misery and to see illness as the disruptor for both of you. It may be helpful to talk together about what illness had done to your lives -- both your lives, separate and together. Listening with openness and empathy to each others' feelings can create shifts in entrenched patterns that allow for new possibilities --- and new solutions. A third party - therapist or clergy person - can help keep this conversation on track.
Some couples decide to stay together, but have essentially separate lives. Some couples decide to live separately, but remain in close and supportive contact. There are any number of permutations.
If you do decide on divorce, it sounds like it would be useful to build your support system first. You will need people to talk to and people to help you out. Are there chronic illness or divorce support groups near you? A family agency or hospital social worker could probably put you in touch with groups and other useful resources. And most people use a mediator or lawyers to help negotiate the terms of the divorce.
You are in a very tough situation. I will hold you in my thoughts and hope for outcomes that bring you more peace.
Any other readers have thoughts or experiences to share? Please join in.
4 comments:
I don't know you, or him, and I've never been married, so I don't know how much help I can be. A couple of things jumped out at me, though.
He has told me that he doesn't drag race, go to metal concerts, and other things he enjoys b/c I make him feel guilty for enjoying his life.
Does he feel guilty because you react negatively when he goes out? Or because he simply feels bad that he can do these things and you can't?
We are only days away from our 24yr anniversary & I'm feeling like its time to let go.
Your willingness to let go is a source of strength. If the marriage is better off dissolved, then you'll save yourself time and pain by realizing it now. On the other hand, if the marriage is worth saving, then your attitude gives it a fighting chance. Your husband will be able to better cope with the struggles involved in a caregiver relationship if he feels he has freely chosen to take them on, as opposed to sticking around out of guilt and obligation.
"One is afflicted; one is affected." -- That's my first thought in response to this post ... My beloved aunt, married to the love of her life now for over 58 years, said these words to me not long ago. Her husband has a rare neuromuscular disease; his body has been breaking down gradually since about 1962.
I've never known another couple like them. Recently, a friend asked me if I'd ever known a long-married and *long-loving* couple ... I had to pause and really think on his question. I came up with one: my aunt and uncle. These two have something so rare ... something that I still aspire to ...
A few months ago, my husband of nearly a decade left me. I have been very ill for three years ... and was just beginning to 'get my mojo back' when he made it irrefutably clear that he was going. Essentially, what broke our bond was too much stress, injury and illness for too long ... and too little support. We both were mired, spent and wasted after years of excessive stress; it seems the straw that broke the camel's back for him was the length of my illness. He wanted me "fixed", and some injuries are not "fixable" ... His own well-being began to erode, and he chose to leave. How I wish it had been otherwise ... but who can say what breaks us and when ... It is very true that our personhood changes over time ... and long illness / injury is a catalyst that upends all our certainties.
The effects of desertion on an already weakened body are disastrous. I'm still here by the insistent love of my friends and kin, and by the strength of my own soul. I have never felt closer to the threat of living in a cardboard box ... and I have never been more determined to be as well as I can. My life is at stake in more ways than one.
Franz Kafka once wrote that a book can be "an axe to the frozen sea within us" ... Sometimes a divorce is that axe, too; I'm finding this to be true.
I have RSD....I was diagnosed about 3 years ago. I had it in both legs and was in a wheelchair for about a year....RSD really is so painful and debilitating. My husband of 14 years could not cope. He asked for a divorce. We did. I did not have a support network...family, friends, no one knew what my illness was. I am walking again....I can't work yet, but am going back to school at age 50. Looking back...despite everything...despite random periods of "what if's," I do believe in 'for better or for worse." And, I believe the divorce was best for both of us.I read so many articles about how hard it is for physically healthy women to adjust to divorce. It is hard for all of us. But, when you are let go because of a chronic illness...you get a true double dip. It is difficult to manage the illness and deal with insurance, depleting funds, putting one's life back together in a way that one can be independent withing the confines of a really bizarre disease that most people don't know about or understand. It's been three years. I can walk again. As I said, I'm back in school - get no support from my husband (didn't want it) and...frankly, I'm scared. Doing the best I can...not giving up...but have a lot of fronts to battle. So glad to have read your post - glad and sad. Glad because I know I am not alone...and sad because I know how....it is. How very hard it is to have someone you love go when the going gets hard. I have been in remission. My husband wanted to get back together...No. I want to be wit someone I can trust to stand by me if no one else will...right now, that person is myself.
Love to you. Be Safe. Be Well.
May I know what happened to this couple? Such situation is really not unusual and a lot of marriages end because of these reasons so knowing what happened might enlighten the minds of others. Anyway, your advices are really very useful. Please keep sharing.
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