FIVE THINGS I’M LEARNING ABOUT MARRIAGE WITH CHRONIC ILLNESS
1. MARRIAGE CAN BE HARD
Our marriage is a redemption story. We weren’t unfaithful. We didn’t stray physically or emotionally. But we did lose our way, releasing hands and hearts across the years — my husband to his job and me to our kids. We forgot to hold on, to reach for one another when the winds first began to blow and the waves started to roll. We forgot to stand together, hold on, and lean in. So we drifted apart, wondering whether we’d made a mistake in marrying, if we’d each chosen the wrong person.
Over the years, we stopped dreaming together, lost our ability communicate, and survived as a couple only because we were both committed. We didn’t feel love. Some days we didn’t even like each other, but we were committed.
So we slogged on, trying to communicate, slowly learning to give each other grace. We were under a tremendous amount of pressure with four seriously ill kids in their teens and early twenties, and me, a chronically ill wife. Most days, we were just trying to survive.
Maybe it was OK that we were struggling. Maybe it was enough that we were committed. Maybe we needed to celebrate that we’d survived together for more than twenty years through incredibly difficult circumstances. Maybe it was enough that we were committed to trying to make our relationship better.
2. CELEBRATING MARRIAGE IS MORE ABOUT FORGIVENESS THAN FEELINGS
Tony and I lost sight of each other somewhere along the way, his life consumed with work, mine with all the medical needs of our family – monthly appointments with dozens of specialists, coordinating medications, treatments, and procedures, managing prolonged hospital stays, insurance appeals, and homeschooling five kids through high school in the midst of all the chaos.
The kids and I lived a life Tony knew increasingly less about. He didn’t understand many of our medical conditions and attended few appointments. The more difficult our home life became, the more Tony poured himself into work. As our kids became more outspoken about his absence in our lives, the distant between Tony and I grew, and somewhere along the way, bitterness seeped into my soul.
With our marriage crumbling and our kids’ lives spinning out-of-control, Tony retired early, coming home to help full-time. Six months later, he pulled me aside one day and said, “I knew our kids were sick, that you’re sick, but I had no idea what you were all going through. I lived here … and I had no idea.”
But I too, needed to accept my role in our broken relationship. I had stopped communicating, stopped trying to explain, stopped asking for help. I had learned to figure things out and do what needed to be done, but I had cut my husband entirely out of the equation. The more self-sufficient I became, the less he felt needed. And the less he felt needed, the more he poured himself into work. It was a vicious cycle. Before our marriage could heal, we had to learn to forgive each other.
3. MAKING TIME FOR ONE ANOTHER IS A NEED
Time became a non-negotiable in our healing journey. With our marriage at the breaking point, we committed to dinner out (in the same booth in the same restaurant) every Thursday evening for a year. Those early dinners were often painful and uncomfortable. Sometimes we barely spoke or made eye contact, sometimes we argued, sometimes we left the restaurant frustrated and angry. Often, I cried. And sometimes it took everything in me to stay in that booth all the way through dinner.
But we didn’t give up. We kept at it week after week.
And slowly, things changed. One Thursday, we talked without tears, impatience, or frustration. Another Thursday, we reminisced about the early years, the good times, the days before sickness sent out world inexplicably careening out of control. As the weeks grew into months and spring warmed into summer, we persevered, stumbling through all kinds of conflicting emotion. But we also began to laugh, to talk about the things that hurt, to bravely, vulnerably share our hopes and dreams. We began to ask each other questions about this incomprehensible life we were living. Some Thursdays we left the restaurant smiling. And some nights the tears were good.
One month, we braved an overnight away. We weren’t able to leave for long – just 24 hours – but it was good. A few months later, we scheduled another, both looking forward to the time away – 24 uninterrupted, unhurried, and unscheduled hours spent celebrating our marriage.
Time, we have learned, is not a luxury, but a necessity, vital to a strong and healthy marriage.
4. CELEBRATING MARRIAGE: INTIMACY MATTERS
I wish I’d understood the importance of intimacy so much sooner in our marriage. Because intimacy is holy ground. After three decades of marriage, I’m still not sure I can describe exactly what I mean, but for that for us, intimacy facilitates trust and authenticity. Giving ourselves wholly and honestly to one another is a vulnerable and deeply beautiful experience, fostering greater forgiveness between us, and more grace toward one another than any other aspect of our relationship. We enjoy one another other more after three decades of marriage than we did as newlyweds. Intimacy is a gift we offer each other, and when we unconditionally accept one another as-is, it becomes a precious experience on holy ground.
5. CELEBRATING MARRIAGE: DIFFERENCES ARE GOOD!
This is something we are still learning. We bring different gifts to the marriage and those differences are GOOD. My husband sees the big picture. I see the small details. Sometimes, Tony leaps with limited information, sometimes I’m trapped in the minutia. Tony is spontaneous. I need time and space to process. Tony loves food. I eat to survive. He is excellent at small talk and making people feel welcome. I am comfortable behind-the-scenes. We need each other, we need our differing gifts, skills, and perspectives. Together, we are better.
Together, we bring a breadth and depth to our relationship that we wouldn’t experience apart. The ways we solve conflict, handle money, and use our time, the ways we clean, deal with pain, handle illness, celebrate holidays, dream, eat, and care for friends and family will be different. But those differences, while sometimes difficult, are also good. We are so much better together.
REDEEMING OUR MARRIAGE
To redeem means to buy back, to free from harm or distress, to renew. It has taken years, but my husband and I have found our way back to each other. Our circumstances haven’t changed. But we talk and laugh together again. We lean toward one another when the storms roll in. We dream together, walk together, and pray together. We also still misunderstand each other, miscommunicate sometimes, and feel the tug of old hurts. Sometimes, I still interrupt and “talk over” my husband. Sometimes, he still retreats, gets quiet, and checks out. But the frustrations are more moments than days. There is more laughter than impatience. More compassion than criticism. More standing together than going it alone.
We will always be imperfect people, living in an imperfect world, committed to an imperfect marriage, raising an imperfect family, surrounded by imperfect friends. Illness will always be part of our story this side of Heaven. Grief will continue to add its shadows to our story. But right here, in the midst of all this imperfection, we are also learning to lean in, laugh together, and in the very wild-eye of the struggle, to celebrate.
Cindee Snider Re
Author, Photographer, and Co-Founder at Chronic Joy®
Cindee is wife of the man she loves most in this world, mama of five world-shaking creatives (19-27), author of Discovering Hope, Finding Purpose, Embracing Worth and I Take You in Sickness and in Health, photographer, craver of quiet, lover of cotton, denim, Jesus and tea, and co-founder of Chronic Joy®. Cindee and four of her five kids have Ehlers-Danlos, dysautonomia, intractable migraine, and myriad co-existing conditions through which they're learning the deeper the valley, the greater their capacity for joy.