Chronic illness and pain really stink (or insert your own adjective here). For the person suffering, it’s rough. It’s hard to find empathy from others because to find empathy means you have to share about how you really feel, and that means opening yourself up to possible pity, unwanted advice, or criticism. And when you find people who are good listeners, you risk wearing them out. So, if you’ve been at this for a while, you’re cautious. You’ve lost people. But at least we know we need people. (I know this is a strange way to start out a post on Valentine’s day but bear with me.)
Today I want to talk about the others. Our others.
For the spouse or significant other of the person with chronic illness, I want to tell you that the road is hard and isolating. Possibly just as much as the sufferer. I want to acknowledge your pain.
When illness hits one of you, the other often goes unnoticed. People ask how the ill partner is and if they need anything, etc. What those outside the relationship (and sometimes the others themselves) don’t realize is that, as a couple, both of you are hurting. All the times you have found empathy? Your other is not even looking for it because they don’t realize they need it. But they do.
This wasn’t what your husband or wife—your other—signed up for. It’s in the vows—for better or for worse. When you’re newly married, the idea of worse isn’t on the radar. Forgive me for speaking in generalities. There are people who marry someone with a current illness or disability and are a bit more prepared. I say a bit because our imaginations just can’t do it justice: watching the one you love suffer is hard work. It’s painful.
There’s a certain amount of helplessness that occurs when your spouse becomes permanently hurt or ill and you can’t do anything about it. You can’t make them well, and you can’t take away their pain. This doesn’t change your desire to do so, though. You begin a fight you don’t know how to win. That you can’t actually win. Sorry.
It’s maddening and frustrating. It’s agonizing and life-altering. You get angry. Rightly so. It’s not fair. Acceptance comes and goes like the tides. There’s one thing no one seems to expect, though: Grief.
Grief is a daily part of the illness process for the sick/suffering—mourning who you aren’t anymore, learning to adjust to the new normal, the new (less improved) you. It goes up and down like a roller coaster. One day you are managing, at the top, looking above the clouds, and the next you are building speed toward the bottom that’s engulfed in fog, not sure if you’re going to stop before you hit something.
It is also this way for your other.
You as a couple can’t do the things you used to. Long strolls, spontaneous events, and big days packed with activities are done. It used to be about the two of you (and possibly your kids). Now, it’s entirely about one of you and deciding on what can they manage. Doing things in succession is in the past. Maybe one or two hours, or a half of a day is possible, but long weekends of jumping from one thing to another are out. You, our other, are not now the equal partner, but the caregiver.
This is a huge shift. And it hurts.
Unless you’re practiced in being self-sacrificing, it might become unbearable. As Christians, my husband and I count on the Lord giving us extra peace and strength and joy. The Holy Spirit has an unending supply. On our best days, we remember to pray and ask. On our worst? I’ll just say it, those are the worst.
My message is this: It’s important for us to realize that our significant other is suffering, too. Differently, but they are on a similar path that intersects yours. It weaves back and forth across your way, under you, around you in a pattern that reveals pain and love and hope and all that in between.
So while you need time to grieve, give your other the space to do so, too. It’s real and necessary. It takes patience and love and forgiveness. For both of you. Every day. The good ones and the rough ones. You’re really in this together. Talk to each other. Share your disappointments. Find your new path. And then find another new path. And another. Don’t give up on each other. What is meant to be a curse, can turn into a blessing that ties you closer together than you ever imagined you could be with another person. It’s not easy. But it’s true.
To my other, my sweet husband: You are not forgotten. I see you. I see your sacrifices. I see the worry in your eyes. I see your pain. You are appreciated and I’m so grateful. I’m blessed that I can face this with you. You are by my side—and on tough days at my back pushing my wheelchair. Even so, you never make me feel disabled. You never make me feel less. You see me as I used to be, and through your eyes, I see myself in a new light. I don’t know how you do that, but you do. I love you. Happy Valentine’s day.Read More
I’ve always loved romance. Even as a kid, the episodes of television I connected to the most had romantic elements. One of the first I can remember was an episode of the Incredible Hulk, where David’s wife passes away…sniffle. Remember when he carried her through the hurricane after a car accident, desperately trying to save her? Oh. My. Heart. I was nine and devastated. However, the episode made an impact on my mind that stuck with me: Love came with risk and sacrifice. It still does.
Thirty years ago, my goal for a marriage partner was someone who shared my faith, someone who would want to be married forever, who I could be around without make-up on and still feel comfortable, and (this was the biggie) someone whose underwear I would be willing to wash by hand. That last one? Yeah. No idea where that came from…but 25 years in, I think it’s a good check-off point. Although I have yet to do that, you never know where life might take you.
Or how soon it will take you there.
I didn’t plan to be disabled by chronic illness. No one does. But, to be frank, statistics say 50% of people are temporarily or permanently affected by a chronic condition in their life—so when you draw the line, either you or your spouse is at risk.
Marriage comes about via romance and love, but romance is just part of the roller coaster ride. Marriage, once you’re on board, becomes primarily about sacrifice and your willingness to lay down self—or not. When one of you is ill, the other ends up sacrificing their ideas, their personal goals, their dreams. And the one who is ill must do the same for the other. Being ill all the time can shift the focus to the illness’s needs. This is natural for a time until you find your new normal, but then it must stop. Because if it doesn’t, your marriage will become lopsided and your partner’s needs will be of secondary importance. Before you realize it, your marriage will be in trouble.
God created Biblical marriage to be the combining of two into one. Illness and other circumstances can claw away at you, trying to separate the whole into two distracted, broken individuals. But you can’t let it. No matter how tired or sick you are, it’s possible to think of that other person before yourself. When you do that, it gets the focus off the illness and back on your relationship.
My husband and I have been married for close to 25 years. In our relationship we’ve been in a boating accident, been hit by a semi, survived college, survived poverty, had surgery, and more surgery, had sick kids, lost loved ones, and shared eight address across four states. We’ve faced a lot of trials in our lives, but none more debilitating than chronic illness. And yet, we are stronger together now than we were before. Not to say we haven’t had rough moments or times we wished the burdens of illness could be completely removed from our lives. But when you face the hard trials and keep your eyes on the Lord, putting your dependence on Him rather than each other, you come out battered, bruised, but stronger than you were.
Chronic illness taught me that marriage is more about us than about me. It’s about giving up selfish desires and teaming together in daily battles. It’s about long conversations whenever and wherever we can grab them. It’s sharing our joys, laying down selfish desires, building each other up, having each other’s backs, and staying focused on the Lord and His plans for us. Because, even when life seems to be about illness, you have to do your best to still make it about the two of you. You have to be on the same side of the battle. It’s you both against the illness. It’s about our commitment to one another and God more than our commitment to our own happiness. It’s about giving the other grace and showing mercy.
It is sacrificial love for one another.
John 15:12,13 (Jesus said) This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends.
If you’re like me, the American dream was drilled into your head through television. That dream is slightly askew these days, but I think it’s still holding fast in our psyches. It goes something like this: I’m going to marry the person of my dreams. We’re going to live happily ever after (whatever happily means by your definition). We will be married forever and die at a ripe old age, painlessly, holding hands in our sleep. Marriage is all about love and romance and passion and having my needs met. Right?
It doesn’t include driving your spouse to the hospital at 2 AM because he can’t breathe, and then sleeping in the hospital parking lot in the car with your baby because you can’t trust yourself to drive home. It doesn’t include holding your spouse’s head while he or she vomits, or wiping up the floor because they’ve missed the toilet. It doesn’t include watching your spouse fade from the person they were because of chronic illness a good forty years ahead of schedule due to a genetic disease. It doesn’t include going into debt to pay for medications and specialists. Or watching them spend thirty plus hours of each week curled in a chair because their life-saving medication makes them feel awful. Or surgery. Or accidents. Or any of those uncomfortable things that reminds us this life can be one trial after another.
But it should. I feel like petitioning every premarital counselor out there and asking them to change their quizzes. What will you do if you can’t take that trip you’ve always wanted to take? What will you do when your spouse becomes disabled (we all seem to at one point or another), or if your spouse gets cancer and loses a body part or goes bald? If they lose their minds to disease? What will you do if your loved one is suffering? When you need to bathe them or change them? Will you leave because you can’t bear to watch them suffer? Or because your needs aren’t being met and they’ve become a burden (whatever burden means by your definition)? I sure hope not.
This blog post honors those who stay.
The world says self, but God’s Word says sacrifice. God created marriage as a sacrificial covenant. It’s not just a safe place to have kids. It’s not just an expensive party where your friends and family come wish you well and and give you awesome presents (we got 12 clocks…is there a hidden meaning in that?). Or about tax write-offs (and thanks to the government, that’s about to end anyway!). Contrary to popular belief, it’s about loving that other person sacrificially. It’s about putting them and their needs before yours. It’s not about you, it’s about them.
So. If you have stayed when it was messy, painful, heartbreaking, perspective shifting, expensive, inconvenient, dream-killing, hard, sleepless, tiresome: thank you. You mean the world to your spouse who feels like a burden, who wishes they were different or circumstances were different. You are showing them and the world what it means to die to self. You are reflecting the sacrificial love of God to your spouse, your kids, your friends–even strangers. And in that, the sacrifice Jesus made for us all.
Thanks for staying.