Saving a Chronically Ill Marriage

"Therefore be IMITATORS of God, as beloved children. And WALK IN LOVE, as CHRiST loved us and gave Himself up for us, a fragrant offering & sacrifice to God." (Ephesians 5:1-2)

Marriage is a choice, but what we often forget is that it continues to be a choice every day, sometimes every hour or even every minute, after we make our vows to each other in front of God and our loved ones on that one special day. You made the choice to get married years ago when your bodies were beautiful and working properly, and the dreams you dreamed together were ripe for the picking, not deferred indefinitely by an illness and the physical, emotional, and financial costs that no one could control. Now you have to make the choice to be married, but make it with our eyes wide open to what "for better or worse until death do us part" really means. 

The odds are against us. Some researchers say that as many as 80% of marriages where one person is chronically ill will end in divorce. Chronic illness is a deal-breaker for a lot of promises. But in all honesty, I don't know what I would do without my husband even though this disease of mine makes it difficult to be (and sometimes to even want to be) a wife. But I have chosen and am choosing to be married, so here is some of what I've learned, for what it's worth. **I am not a couple's therapist nor am I any kind of expert. I'm a chronically ill wife who's had the horrible experience of feeling her marriage slip away but is still married and a lot more happily despite the fact that my illness looms ever-present.

If you read no further, please read this: everyone's marriage is hard work

and there are no quick-fixes. Whatever choice lies before you at any given time,

it can usually be boiled down to love or not to love. Choose to love.

Let Your Husband In When All You Want to Do Is Shut the Door and Be Alone

I'm exhausted most of the time, what with raising a toddler and trying to keep the house in order and being sick, on several pretty potent daily meds and in constant pain. So, I sneak up to the bedroom for some precious alone-time whenever I can, even missing meals to grab a few moments rest. Sometimes this is absolutely necessary. But if I do it all the time, it does us more harm than good. When are we a family? When do we get to know each other? We grow older, we change, but like roommates, not like a husband and wife. That is not how any marriage is meant to be. Put your marriage before yourself whenever it's feasible and let your husband in that room with you, or stay downstairs with him, if only for a few extra minutes.

Be Kind When All You Want to Do is Be Mean

When our own body is our worst enemy, it feels like everyone is our enemy: our doctors who can't heal us, our husbands who don't understand us, our families who won't listen to us, our friends who don't call us anymore... Why? Because no one gets it. No one understands the pain we're in. No one knows what it's like to feel this lousy day after day after horrible day. (We forget to ask the ever important question, "How could they know if they've never been here?") And so we are naturally--albeit sinfully--on the defensive.

You got the wrong kind of juice?? You don't care if I even eat, do you?!

You don't care if I live or die!

STOP. No. That's 100% wrong and inexcusable (not to mention silly, but yes it does happen, and no we're not proud of it). Our husbands are not the enemy. He made a mistake. He should be thanked graciously, corrected kindly, and forgiven freely. It's juice. He wouldn't have bothered to get us anything if he didn't care about us. But how much do we care about him? Because it doesn't look like we care much about him when we act like this: just about the juice and ourselves. But do not lose heart when this happens. We are human, too, what's more we are humans with more on our shoulders than is fair for anyone to be asked to bear every day until death. But that is not an excuse for nasty, hurtful behavior. We are forgiven the same as they are so that we are able to turn again and do better the next time.

Have a Conversation Even When You Don't Have the Energy to Talk

...and pray together even when you don't have the energy to pray alone. Even if it's just for 5 minutes. I am terrible at this. "I don't want to hear it..." comes to my mind so frequently, it's downright mean. Finally I asked myself, why don't I want to hear it? Because I want a job. I want to leave the house. I want to have things and events and friends to talk about. I'm jealous, that's why: it's not all fatigue and, "My problems are so much bigger," and being in too much pain to focus. So I force myself to ask about his day when it's the last thing I want to do, and lo and behold... I enjoy listening to him, whatever he has to say. I can stop thinking about myself and how lousy I'm feeling and focus on him.

So, sit at the dinner table even if you can't manage to eat. Help with dishes even if you can't do them all by yourself. Stay awake fifteen minutes longer and visit. Make the time to talk about anything and everything and make the time to say a prayer together aloud every day, don't wait to feel good or for the time to just appear, because it never will.

Physical Intimacy When You Hate the Way You Feel

Sex is important, but your husband does not want to cause you pain. He does not want you to force yourself to make love when making love hurts. But when those moments of physical intimacy begin to wane and finally fizzle out so that years (yes, years) go by without so much as a shared touch, our marriage fizzles out right along with them. We doubt our love for one another. We feel less attractive, we wonder if our spouse is attracted to us. We might even begin to fear sex and all intimacy that might lead to it for the pain it might cause us, and we cannot under any circumstances endure any more pain.

Redefine "physical intimacy."

Physical intimacy doesn't have to include sex or even making out, but rather can be comprised of holding hands, a hug, cuddling on the couch, a backrub, whatever you both are comfortable with. But help your husband to understand that even these things are difficult for you on a bad day because sometimes your skin hurts. Sitting up on a couch hurts. Movement on the other side of your bed makes you cringe. On these days, instead of shutting physical intimacy out completely, expand its definition it so that it works for both of you, once again even if it's just for a few minutes.

Physical Intimacy When You Hate the Way You Look

It is impossible to think of someone loving our body when we absolutely hate it. We hate the way it looks, the way it feels, the way it treats you, what's it's done to our life and the burden it's been to those we love... WE HATE IT, oh how much we hate it with the white-hot fire of a thousand, thousand suns. Why, WHY does he want to touch it? Love it? Give it pleasure (as though that were even possible) and likewise take pleasure in it?

Because he loves YOU, broken body and all.

But we can't even comprehend that anymore. For a long, long time, I didn't recognize myself when I looked in the mirror: moon-faced, balding, always pale, overweight but somehow wasted away thanks to medication and illness... My husband would tell me I was still beautiful to him, and I would get angry. I didn't want to be beautiful "to him." I wanted to look the way I looked before I go sick. We can try to tell ourselves otherwise, but the fact is losing our looks DOES matter. It's losing part of our identity, BUT not the most important part. We are still children of God, and we are still wives. We are beautiful to our husbands, and we are perfect to God. Our husbands do love us. Choose your marriage over yourself and let him love you. Don't shut him out in your own self-loathing, don't confuse his eyes with yours. Try with all your might to see yourself through his eyes and—I cannot say this loudly enough—

Give him the benefit of the doubt. 

Try to believe him when he says that you are beautiful the same way you try to believe God when He says you are forgiven. Your husband knows you. He knows there is more to you than the hair you've lost, the breast that's no longer there, the weight that fluctuates like the tide, the dark circles under your once-bright eyes, the nothing-but-sweatpants-forget-makeup-maybe-I'll-brush-my-hair look that's necessary some days or even most days. LET HIM IN. Please make the choice to let him in. Tell him: "Honey, I feel so damn ugly I can't stand to look at myself and I don't want you to look at me either, and I am so, so sorry that you have to," if that's how you're feeling. You're not fishing for a compliment—there is no compliment potent enough to take that feeling away—you're being honest with him and with yourself. Intimacy is honesty. 

Marital Security 

Reassure each other (out loud and often) that your marriage can NEVER be over, come hell or high water, even if you have to be miserable with each other until the end of your days. We must rest, and we can only rest if we are secure. We have to know, and to make it known, that the promises we made at the altar, especially the "in sickness and in health... until death do us part," part will hold true until death does actually do us part, no matter how ugly things get.

NO MATTER HOW UGLY.

That's the choice right there: tell your husband that you will choose to love him to the best of your ability even on the days when you struggle to like him because that's what marriage IS, and ask him to please do the same for you because (from our perspective, given how we feel and how we look) the days he struggles to like us must far outnumber the days we struggle to like him. How do I know that? Because I struggle to like myself about 95% of the time.

We have too much anxiety as it is. Put the anxiety of fearing you'll wake up one morning to find his bags packed to behind you by renewing your vows with each other as often as you need to.

Let Someone In on What's Going On

...not to vent (though that is important, too, so long as the 8th Commandment is kept), but to have someone in your marriage's corner (not your own personal corner). I struggle with this particular bit of advice because it didn't work out at all well for my own marriage (my husband asked the wrong people for help actually ended up being threatened as opposed to encouraged), but if you choose the people you confide in wisely, you will be better off for it. It's best that you do this together as a team, or else the other half of your relationship might very fairly feel left-out or even ganged-up on.

Our marriages need to not be so private, especially if we're not particularly proud of them at the moment. I've heard people say, "We've been married for so-many-years and never had a single fight," and once I am finished feeling ashamed of my own marriage and our arguments, I begin to wonder #1) How are they defining "fight?" and #2) How is that even possible? and #3) How unfortunate to never have felt the joy of making up. Everyone's marriage goes through tough times, even if some of us are very good at swallowing our anger and frustration, because everyone goes through tough times.

How Do I Start?

I can't say what will work for you, but for my husband's birthday, I made him a Love Coupon Book and vowed that I would keep those little promises to him whenever he used a coupon. Cheesy as all get out, I know, but it actually really helped me get my head on straight. The coupons included:

 "1 Make Out Session"

"30 Minutes of Cuddle Time"

"1 Conversation, Topic of Your Choice"

"1 Stop Nagging No Questions Asked"

...and things like that. In other words, I gave control of our relationship over to him (and took it away from my illness) for the first time in a very long time. I trusted that he wouldn't ask me to do anything physical if he knew I was in the middle of a colitis attack (that wouldn't be fun for anyone), and I forced myself to make him--not my physical health or my own level of comfort--my top priority at least once in awhile.

And what do you know... as time went on, it got easier to do without coupons. Violà, a real marriage. Not a perfect one, mind you: just a real one. That's the reason behind all the, "even if it's just for a few minutes," qualifications: #1) It will get easier the more you do it, whatever it is, and #2) Even doing it for a few minutes shows your husband that you are making an effort. And our husbands need to see that he comes before our illness at least once in awhile because our illness will take over EVERYTHING if we let it, like some noxious weed left unattended. And oh how Satan wants that to happen! My illness took my career, our savings, it delayed our having a family, it took my looks, my happiness, my confidence, and a whole lot of  the joy I take from life, but I will not let it take my faith in God, and I will not let it take my marriage. Protect what's yours. Be imitators of Christ and choose LOVE, even when it hurts to do so.