Of Love and Chronic Illness

It’s Valentines’ Day. Couples everywhere are flocking to restaurants and coffeeshops and romantic places. Love is in the air!

But love, and relationships in general, can be a little complicated if you live with chronic illness or a medical condition. Between physical limitations, flare-ups, medication adjustments, and doctor visits, it can seem like there’s not much room for romance.

This year my husband and I will celebrate seventeen years of marriage together. Many of those years have been impacted by my health. In fact, sometimes it feels as though our entire lives revolve around my symptoms. As more and more of our schedule is devoted to appointments and conversations are dominated by medical discussions, sometimes I feel more like his patient than his wife.

I have to imagine I’m not alone.

When you live with chronic illness, you learn to be adaptive. Best laid plans don’t always work out. For example, some years ago my husband and I went out of town for a weekend away. We don’t get away without our kids often, but we live for our getaways. We had tickets for a concert, and planned to spend some time enjoying the big city in which we were staying. I was at the height of a flare-up, and in addition to my usual fatigue and low energy, I was dependent on a cane to get around. On the night of the concert, it was cold and rainy and miserable. We arrived in town just in time for the show, with no time to stop for dinner. We parked several blocks from the venue and hurried through the sleet to our show. It was a great time! We had good seats, and we thoroughly enjoyed the concert. When it let out just before ten o’clock, we tumbled back out into the cold weather. I waited at the venue doors while my husband, graciously, brought the car. We returned to our hotel in hopes of finding the restaurant open. It was not. For the next two hours, we traipsed from one restaurant to another all across town. Every one had closed. Finally, exhausted and starving, we stumbled into a convenience store. We grabbed a handful of granola bars and mixed nuts and drinks. That night, at almost midnight, we sat on the edge of our hotel bed eating a late picnic of snacks. It’s still a memory that makes us laugh.

The next day, we had plans to visit an IKEA–a real treat, since we don’t have one nearby. While my husband had been excited about the concert, this shopping trip was at the top of the list of things I was anticipating. We parked as close as we could and wandered in. We searched, in vain, for a wheelchair. I was already running low after all of the expenditure of the night before. He asked me whether I could make it through the store on foot. I wasn’t about to give up on IKEA! So we went on. As we wound through the store, I became more and more depleted. We stopped in just about every room display to sit and rest. We joked that we were trying out all of the furniture, just in case. I remember almost nothing from the day, just the feeling that I had never imagined IKEA could be so enormous. It felt as though we would never get to the end of the route through the building. We finally reached the doors, and he again pulled up the car. I sat slumped in the front seat. We’d had many other plans for our time away, and several hours remaining together before we had to get home to our kids. I leaned my head into the car seat and cried. “I can’t do it,” I remember saying. “I just can’t do any more.” We returned home early. I was devastated.

Moments like these are all too common with chronic illness. Cancelled plans, unexpected symptoms… it all takes the wind out of romance sometimes.

But we are learning to adapt. When we are in a bad stretch, we make alternate plans. Recently, my parents offered to take our kids for a couple of days. Normally, this would have been the perfect opportunity to get out on the town and visit some favorite restaurants and events. But I just wasn’t up to it this time. In fact, our one quick trip to a shop for a few things was enough to exhaust me. So we made other plans. We ordered a gluten free charcuterie board from a local shop and enjoyed a picnic date at home. We rented a movie we’ve been wanting to see and curled up on the couch. We lit some candles and enjoyed a quiet dinner at the kitchen counter. It was wonderful.

And then there are the good days, sometimes unexpected. The sun is shining, I have a little more energy, and a space opens up in our schedules. On those days, we try to grab the bikes, or hit the trails, or do something together that we can’t do on the bad days. As my in-laws like to say, we “grab the gusto while we can.” It’s the name of the game with chronic illness. Adapt, adapt, for better or for worse!

I asked my husband one time whether he wished he had a wife who didn’t turn his life upside down. He looked at me as if I were crazy. We’ve had many ups and downs, sure. We’ve sometimes had more cancelled plans than plans that came to fruition. But we’ve also had hours of laughter as he pushed me in a wheelchair–often popping wheelies that made my stomach flip. We’ve had moments at hospital bedsides, whispering to each other about our deepest fears. We’ve had beautiful, healthy days that felt even more blissful because of the reprieve they represented. We’ve known each other at deep levels, in deep needs, through deep fears. In short, we’ve carried each other. We’ve adapted together. We’ve let our love be shaped, even by chronic illness. And it’s far more beautiful as a result.

And that is what love with chronic illness can be.

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