Back in August of 1999, I was a 20-year-old college student excited to marry my high school sweetheart. I had bladder issues from the time I was 3. I was diagnosed with IC when I was 13. When I was 15, my husband asked me to be his girlfriend. As time went on, my symptoms improved, and IC didn’t play a big role in my life. We got married, I finished college and was about to graduate with my master’s degree when IC showed up in full force again. In a way that only chronic illness can do, IC threw us for a loop. We were 23 and 25, at the cusp of starting real careers and adult lives and I could hardly leave our apartment.

While circumstances are different, this scenario is one all too familiar for IC patients. Managing both a chronic pain condition and a marriage or long-term relationship brings monumental challenges. Unfortunately, not all relationships survive the stress of chronic illness. A study released in 2015 found that marriages where the wife was diagnosed with a serious health issue were much more likely to end in divorce.(1)

My husband and I will celebrate 19 years of marriage later this year. Through all of our ups and downs with my health, we have learned a few things along the way that have helped our marriage not only stay in tact but thrive in the midst of chronic pain. It hasn’t been perfect; we aren’t perfect. We have just learned – through some trial and error – how to be the best us that we can be and some things to keep in mind along the journey of relationships with IC.

Don’t hide your feelings

If you’re having a flare, tell your spouse. If you’re having an emotional day, share that with them. That also goes both ways. IC spouses need to also be able to have a safe space to share how they are feeling, which may be annoyed or frustrated. As we make plans for the day, my husband will check in with me to see how I’m feeling physically. Some days I can do way more than others, and he knows that. So many times, our plans start with a check-in for how I’m feeling. And if I’m not feeling up to something, I’m honest about it.

IC is unpredictable, so communicating about how you’re doing is important. It changes from one day to the next and sometimes even one hour to the next. A couple of years ago, my husband and I were heading out for a day trip. I was fine when we left. An hour later, I was in agony in one of the worst flares I’ve had in a long time. Our plans changed because I just needed to be at home with my heating pad. It wouldn’t have benefitted either of us if I had tried to hide my misery. I’d have been grumpy and unable to even enjoy the day. So, he wouldn’t have been happy either. Honesty really is the best policy.

Become a team

Sticking together through thick and thin requires being a team in every way. Remember that you’re working together as a team and not against each other as opponents. Talk about health decisions together. Really listen to one another. Face health and life problems together as a united front. Of course, you won’t always agree on how to do things, but talk through it until you come up with a solution that you can both agree on. We’ve learned through the years that we have way too many battles to fight in life to spend time and energy fighting with each other as well.

Be each other’s biggest cheerleader

Staying with the team analogy, cheer each other on. My husband has celebrated with me the small victories in life with IC. He has gently reminded me when I am in an awful flare that it won’t be this bad forever. He has encouraged me to seek out doctors who help and try self-help techniques to get me feeling better. And when he drives me 4-1/2 hours one way to a doctor’s appointment (so I can actually get the help I need), I make sure to thank and praise him. Should he do that as my husband? Yeah. Does he appreciate hearing my gratitude? Definitely! Because I quite literally couldn’t make it there and back without my husband when my appointments usually leave me feeling awful. Even better, I can look over and usually find him wearing his shirt that proclaims, “My wife rocks,” which leaves me feeling good that he really doesn’t mind being there for me.

Know when to get help

Processing life with a chronic health issue is hard. It is hard for you and for your family. It brings all sorts of fears, stress and anxiety. Sometimes those can’t be managed on your own. Sometimes you need help, whether it is individual counseling, couples’ counseling, medication or a mix of all three. There is no shame in needing help. However, if you need help and don’t get it, the problems only grow bigger and more out of control. Depression often goes hand-in-hand with IC.(2)

Mourn and accept together

While my husband and I had a heads-up about IC from the beginning of our relationship, many couples are caught more off-guard when a suddenly healthy person is hit out of the blue with IC. The harsh reality is that life is different than what you expected. This is true for every person, but perhaps it’s a bigger truth for those of with chronic illness who realize the dreams we had and the plans we made are no longer a possibility. It hurts. It is like a death and requires time to grieve. Grieving together is a good thing. I may wish that my bladder pain only affected me, but it doesn’t. It affects my husband as well. Even with our heads-up about my issues, we still had to go through a grieving process.

Working through all of those feelings so you can both move on to acceptance of the new normal is important. And you may not get there at the same time. Most likely you each really will go through the various stages of grief with denial, anger and sadness. My husband got through it before I did, in fact. Early on in our marriage, I was shocked that my bladder started acting up so severely. Then I would have a good month (or week) and think I was fine. When the next flare started, I went through the mourning process all over again. My husband got frustrated with me as I was all doom-and-gloom each time. We have talked it through enough that he knows sometimes I just need to vent without needing him to fix the problem. And sometimes I do need him to gently remind me that this is what life is with IC and intense flares really don’t last forever.

Getting through mourning together can also help you both be able to move on together. You don’t have to like it (and probably you never will!), but this is the new normal. It is the way life is and you have to make the best of it – together!

Get outside of yourselves

There’s a lot to be said for distraction and focusing on other people can sometimes be just the answer. Maybe find a place to volunteer together or meet friends for dinner. Every Sunday morning, my husband joins me in teaching Sunday School to a group of 4- to 7-year-olds. Even in the worst of times when life seems to be falling apart in every way, that one hour each week has been a great distraction because we are too busy to be focused on ourselves.

Finding something you enjoy doing together for fun that works for both of you is crucial. We love going to see a movie at the theater and getting lost in another world for a while. And for the times when I don’t feel well enough to even go sit in a movie theater, we relax together on the couch. Sometimes I read while he plays a video game and sometimes we play video games or watch a show together. He’s even gotten me hooked on role playing, because sitting around a table isn’t too hard on my bladder (even if I sometimes have to grab a pillow to sit on and a heating pad to hold on my belly).

Make time to talk about the hard stuff

At the top of almost every list of what couples argue about is money and sex. And these two topics are really hot button issues in a relationship with IC. My husband and I have found that talking about these things work best when we are not in the middle of crisis mode or upset. Sometimes we table the discussion for later, but we come back to it so it gets resolved. These days with having small children at home, we have even had “meetings” at a restaurant so we could sit together without much interruption and work through budgeting issues as we needed to. Because for the vast majority of us, money isn’t in ready supply. With IC, that is even more the case with health bills piling up and income being lower because we can’t work or work as much as our healthy counterparts. Every year when I add our health care expenses, I share them with my husband. We mention what we could have done with that money instead (nice vacations, fancier cars, all sorts of things!), then we sigh and move on.

Sex is no different. Having honest discussions about what works, what doesn’t, possible alternatives and all of those things are vital in an IC relationship. In fact, that’s a whole other article. You can find some great tips here.(3)

Just like with mourning and accepting together, discussions about money and sex need to make sure they avoid the blame game. After all, the culprit isn’t the IC patient; it’s the IC itself. Join together in blaming IC and then find solutions together on how you’re going to move forward.

Focus on the positive stuff

Thinking of IC as being something great or positive is a challenge for any patient, let alone their significant others. In fact, when I mentioned this to my husband, he couldn’t think of anything positive about IC. I can at least think of people I know I wouldn’t otherwise and lessons I’ve learned on how to slow down life. I’m sure he can, too, but it’s hard. Sometimes focusing on the positive means you choose to say, “I’m glad we were able to be together today” instead of saying “I hate we didn’t get to do anything besides sit on the couch together.” It’s totally OK to have negative feelings and talk about negative feelings, but don’t get stuck there. Force yourself to find the positive and it will get easier. I even have made myself use a gratitude journal and write down three things I was thankful for at the end of each day. Do whatever works for you!

And also remember this as you deal with each other. Focus on the good qualities in your significant other instead of all their shortcomings. For each negative you think of, challenge yourself to think of three positive things. For each criticism you vocalize, tell them three things you love about them. With practice, it gets easier and easier to find and focus on the positive instead of the negative, but you have to be intentional about it. It goes against our human nature.

Talk about more than your health

Yes, your bladder hurts. Yes, you are frustrated that you can’t have certain foods and drinks without paying for it. But, you are so much more than your bladder. Seriously. You are still a person, not just a bladder, not just a patient. Remind yourself and your significant other of this by not dwelling constantly on your health. You will drive yourself and your spouse crazy. While it is important to me to be always open and honest with my husband, I also have benefitted from being able to talk with other patients through the forum at the IC Network.(4) While my husband understands me and my health issues better than anyone else on the planet, he still doesn’t understand them as personally as other patients do. Sometimes finding outside support can be so very helpful. It also helps provide a release for me to talk about my bladder stuff so that I can then talk about other things with my husband.

Acknowledge your spouse’s pain – physical and otherwise

Pain isn’t a contest. It sounds silly to say, yet sometimes we act like it is. Early on when my IC was screaming at me, my husband would talk about having a headache, and I would roll my eyes. The truth is that if we compared pain, mine would always win because it is always there and affects every part of my life. But that doesn’t lessen his pain. And minimizing his pain only serves to keep him from talking to me about what’s going on with him. That’s not fair. So now I work to be compassionate no matter what when he has an issue.

I’ve found this equally as true to just keep my mouth shut and let HIM vent about the frustrations of my having IC sometimes. He needs support, too. Sometimes he needs to be able to complain that he has to pick up slack around the house or with the kids because I’m unable to. I know he isn’t blaming me. I know it isn’t my fault. He knows all those things as well, but he is human and gets frustrated. He needs an outlet every bit as much as I do.

Above all, give each other grace

We’re all human. We all have bad days and grumpy moods. We all get tired and cranky. Grace goes a long way. Grace doesn’t say you are giving someone permission to walk all over you. That’s not OK. But it does say, “I see you’re having a difficult time right now, so I’m not going to take that attitude personally.” My husband and I have learned through the years when the other needs space. We both tend to be quiet people when something is bothering us. We do need to talk things through sometimes, but many times one of us just needs time alone for an hour or two to regroup. If I know my husband is doing the best he can, and he knows I am in doing the best I can, then we are able to give each other grace and leeway when an afternoon goes sideways.

References

  1. Karraker A, et. al. In Sickness and in Health? Physical Illness as a Risk Factor for Marital Dissolution in Later Life. J Health Soc Behav. 2015 Sep; 56(3): 420–435.
  2. IC Network. Depression and Interstitial Cystitis.
  3. IC Network forum. Jen’s Tips for Great IC Sex.
  4. IC Network forum. IC Patient Support Forum – Interstitial Cystitis, Bladder & Pelvic Pain.