Promising to love someone in sickness and in health is a common wedding vow. You pledge to love your spouse no matter what. But when one of you has or later gets diagnosed with a chronic illness, that changes everything. Unlike other health crises, chronic illness, like IC, is another lifetime commitment you make — albeit not by choice! And it impacts everything, including your romantic relationship.
IC plays a role in any long-term relationship. When my husband and I got married 22 years ago, I thought my bladder issues were a thing of the past. Three years into our marriage, though, my IC reared its ugly head with more force than ever before. Keeping our relationship strong has taken some work as well as trial and error. However, I’d say that our relationship is stronger today in part because of dealing with chronic illness. We have learned how to communicate better and how to survive adversity.
I’ve previously shared tips for managing marriage and IC, including being open with each other, developing a team mentality, grieving together, talking about more than your health and giving each other grace. But, there are even more ways to keep your relationship strong.
Let go of guilt.
We certainly didn’t ask for IC or any other chronic illness. And we definitely don’t choose to be in pain. So why do we feel guilty when we can’t do things we think we ought to be able to do? Most likely we’re also feeling anger and frustration. Not being able to do something, especially something your family needs, is an awful feeling. Often we can start laying guilt over everything. Not only do we feel bad physically, but we also feel bad emotionally. We feel guilty we aren’t the person our spouse married. All of those feelings lead to a pretty crummy disposition. They get in the way of living the life we have and accepting the new normal in which we’re residing.
When these types of feelings start, flip them around. Instead of thinking about what you can not do, think about what you can. Or stop and appreciate that you have help managing those same tasks you struggle with. I’ve caught myself doing this many times. Through the years, I’ve learned that appreciating the help I have is my best option to move forward. The bonus is that it also makes me love my husband all the more for the way I see him take care of our whole family when I’m not feeling well.
Stop resentment in its tracks.
Our spouses can do things we can’t, and sometimes that stings. We can start to feel resentful that our sweetheart gets to do something we very much want to do. Usually that resentment comes out in negative ways. We might make passive-aggressive comments, get angry with our spouse or try to make them feel guilty. While it’s normal to feel sad at not being able to do something we want to do, we need to make sure we aren’t taking that feeling out on the person we love most.
We also need to give them permission to enjoy life. My husband makes so many sacrifices for our family, including some that are due to my health challenges. I truly do want him to enjoy life. And that’s what I have to remember during the times when he is doing something I wish I could do.
For example, when our son was a toddler, we decided to sign him up for a parent and child swimming class while our preschooler went to her swimming lessons. It was at the YMCA in a very chlorinated swimming pool. I really wanted to do the class with my son, but chlorine bothers my bladder. So, my husband did the class instead. I was sad I couldn’t do the class with my son, but I loved seeing my husband and son interact during the class together. I chose to focus on that instead.
Learn about IC together.
Understanding the chronic illness that’s impacting our lives is vital. Yes, there are many unknowns about IC, but there is also a lot of helpful information. You can sit down and surf the web together to learn more about IC. Or maybe you send him a good article about IC. Maybe you just chat about what you’ve learned or have him go along to urology appointments. No matter how it happens, you both need to learn about IC together. While it helps you understand what’s going on with your own body, it also helps your spouse understand where you’re coming from.
My husband has used his knowledge of IC (much of which I’ve told him about) to encourage me to try different therapies and self-help strategies to feel better. In the end, we both want me to feel better. Understanding IC is the first step toward feeling the best I can.
Talk clearly.
We all know communication is incredibly important to a strong relationship. That is even truer for couples dealing with chronic health issues. Communicating clearly about what you need is crucial. In order to do so, make sure you’re finding the best time to talk. In the middle of a disagreement isn’t the best time. Instead, plan times to sit together and calmly talk about what you both need. Take time to truly think about and assess what you need before talking with your significant other. Be honest, clear and kind in speaking. Be receptive and listen when your partner shares.
Definitely talk about what you need physically or health-wise, and also talk about hot-button topics, like money. Chances are money is tighter thanks to medical expenses and downtime from work. Talk about strategies to navigate your finances successfully. For example, my husband and I have made a budget together. We have shared spreadsheets with our budget and tracking our expenses so we both are aware of how we are spending our money. When we have a big expense, we discuss how to manage it together.
Find joint interests.
One of the best ways to stay connected to your partner and have a stronger relationship is by doing things together. Find at least one activity you enjoy together. If you had a physical activity you were doing but you no longer can, then try new things. Some of the things my husband and I enjoy doing most together work even when I’m in a flare. We enjoy movies and playing games, both of which are seated activities. Gaming was a hobby of his, and then a few years ago, I gave it a try. Now I’m hooked as well. We enjoy a chance to play a variety of tabletop games together. I have a comfy cushion I put on my seat and can plug in my heating pad if needed.
A bonus to doing fun activities together is you also get to make good memories. And you get a chance to get outside of your usual daily life, even just for a bit.
Maintain personal interests.
Couple time is important, but so is individual time. Figure out what gives you joy and how you can incorporate that into your life. And then give your spouse the chance to do the same. Early on in my marriage, my husband would have a weekly night with his friends to play tabletop role-playing games. Instead of grousing that he was spending time away from me, I used that time to go to dinner with a friend, watch a movie I’d been wanting to see or read my book. Nowadays he does everything remotely, so while he’s at his computer, I do my own thing. It works.
In the end, we are both happier and more content. We have gotten to do things we enjoy, and then we have something new to talk about with each other. The happier and more content we are individually, the happier and more content we’ll be in our relationships. Doing things that bring us joy also usually distracts us a bit from difficulties — both physical and mental — for a little while.
Define a new normal together.
A phrase we hear a lot in the chronic illness community is “new normal.” While we have to figure out for ourselves what our new normal looks like when we’re diagnosed with IC, we also have to define that within our relationship. Our spouses are affected by the diagnosis of IC. What we are able to do or not do might be different from when we first met and can even change from day to day. Maybe your new normal means you order takeout on date night instead of going out when you’re in a flare. Or perhaps you and your spouse trade chores so you don’t have to be on your feet.
Talk together about how life is different and what it will look like going forward. Because how we feel can change, our new normal might shift from time to time, and that’s OK. Right now, for instance, my new normal has shifted in the positive direction with my bladder feeling better than it has in a long time. But just a few years ago, I was in almost the exact opposite position. Explaining how I felt and what I could and couldn’t do helped both my husband and me manage our expectations and define our version of normal.
Find little ways to show love to each other.
Don’t forget about romance in the midst of managing life and IC together. Big romantic gestures are nice, but the small acts of love over time usually mean the most. Pick up his favorite food. Give a random hug. Do a chore he usually does. Send him a sweet text in the middle of the day.
Take time to think about what your significant other really does to show you love and say thank you. I see the things my husband does to go above and beyond for me. He has driven me to a urologist four hours away and back in the same day so I could get the best treatment. Once a month or so he picks up my favorite breakfast sandwich after taking the kids to school and brings it home to me. He recently spent hours perfecting a custom computer program to make my work easier without me asking. I love flowers and other romantic gestures as much as anyone, but it’s the everyday and small stuff that reminds me of how much he loves me.
Connect physically.
The pelvic pain and discomfort from IC can make sexual intercourse difficult, at least at times, for many patients. When you’re flaring or having a bad health day, be honest with your spouse about why you’re saying no to intercourse. Remind him that it has absolutely nothing to do with your attraction to him; your bladder is just angry. But do something otherwise physically affectionate, which doesn’t even have to be sexual. Snuggle up together. Hold hands. Give him a backrub. Stay connected physically in ways you comfortably can. Intimacy doesn’t have to mean sexual intercourse.
Communication is key when it comes to physical touch. Have honest and frank discussions outside of the moment. Figure out what works best for you to stay connected as a couple. Maybe you keep a toss pillow on your bed that you flip to a certain side if it’s a good bladder day and you’re open to sexual intercourse. That allows a chance for some spontaneity. Or maybe you have a key word you work into conversation to share that you are ready to be intimate. Use trial and error as necessary to develop a strategy for physical connection that works in your relationship.
The ICN Intimacy and Romance section has numerous ideas for having a physical relationship with your partner.
Keep a sense of humor.
Having a sense of humor in general is good for your relationship. It can bring you closer as a couple. Laughter reduces stress and makes you feel more connected. Don’t be afraid to also laugh together at IC-related things. For example, my husband and I often joke about how he should have looked for a cordless model of a wife as we are sorting out my heating pad cord. My husband, kids and I find it funny I always know where the bathroom is everywhere we go. Either I’ve used the restroom before, or I scoped it out when we entered.
Don’t forget also about laughing together at entertainment. Find a funny movie or television show to watch together and laugh. You’re having fun together, which brings your closer together.
