Married to Someone With UC? You Should Read This
As part of HealthCentral's open letter series, a woman with UC writes to anyone out there caring for a partner with IBDby Jackie Zimmerman Patient Advocate
Dear Spouse of Someone Living With Ulcerative Colitis,
While I know the experience I’ve had in my own relationship, I can only guess what your experience has been like as the partner to someone living with a chronic illness like ulcerative colitis (UC). I’m going to give you my perspective as a wife with UC, but know that I’ll never know exactly what it has been like for you and your spouse — and that’s honestly one of the most beautiful parts of marriage. No one will ever be able to fathom what you share on a daily basis or how you handle being the spouse of someone who is sick.
I don’t know what it’s like to be married to someone who has UC because thankfully my husband is one healthy dude, but I can certainly imagine what it would feel like if our roles were reversed and I had to watch him be sick.
Know this: You are the real MVP of this marriage.
"UC is like an angry doubt cloud that hangs over all the good in your life, and if we let it, it will rob us of all of our most precious things."
UC can bring doubt to a relationship
No matter how secure your relationship is, there’s no question that your spouse has thought about whether you’ll be able to handle them at their sickest, and if you can, how long you’ll be able to do it. To put it clearly, they’re worried you’re going to leave. They might not think about it all the time, but it’s definitely something they’ve considered. UC is like an angry doubt cloud that hangs over all the good in your life, and if we let it, it will rob us of all of our most precious things.
I know that my husband won’t leave me when I’m sick, not only because he tells me regularly, but because we are secure in our relationship. But there are still times when my UC doubt speaks so loudly that I can’t help but entertain what it’s saying.
Please don’t be offended by this. Living with UC gives most people some deep-rooted self-worth issues; we know they’re irrational, but we have them anyway. We just have to keep reminding ourselves to try not to listen to that voice in our heads.
UC can bring guilt to a relationship
There have probably been times in your relationship when you and your spouse had exciting plans for a night out or a weekend getaway, but UC popped in and put the kibosh on those plans. As the spouse to a person with UC, you were probably very understanding. Instead of being upset, you likely spent that time trying to make your partner comfortable, because you’re great.
Every time you have to cancel something because of a UC complication, your spouse will likely deal with some guilt. If they’re like me, it will be tons of guilt. When I was single and UC made me cancel plans, I only had to be disappointed and frustrated with myself. Now, as a wife, I know that my illness is affecting us both and our ability to have fun. I feel overwhelmingly guilty when we have to cancel plans because my husband is perfectly capable of continuing on without me, but he won’t.
It may not make sense, but his love for me in these situations just makes me feel more guilty. I know that I deserve someone that loves me that much, but in those moments, I don’t think I deserve him, and I wish I didn’t hold him back sometimes.
I know it can often feel like UC is the third person in your relationship, and quite honestly, it is. It’s the unruly child you need a break from; it’s the overbearing mother-in-law. UC will always be there to get in your way, ruin your plans, and make your spouse question everything important.
The best way to combat this is to acknowledge that it’s there. Encourage your spouse to talk about living with UC, ask them questions about their experiences, and make UC a dinner table conversation. There are definitely going to be times when your spouse may want to hold back details, but opening the door and giving them the opportunity to share when they want to can help erase shame and stigma that may be living under the surface of your marriage.
Try the 60/40 rule
My husband and I use what we call the 60/40 rule in our relationship. This is the idea that we’re each always working hard to be the 60 percent: the one who is giving more, doing more, helping more. If we’re both working hard to be the 60 percent, then we’ll never know who the 40 percent is, and we’ll never feel like one of us is working harder than the other.
I love this rule on a day-to-day basis, but my reality as a UC patient means that there are going to be times when I’m very clearly the 40 percent person. I’ll probably even be 20-30 percent at times.
If this letter were a flowchart, here would be where I would lead you back to the doubt and guilt parts of living with UC. But I know that when I’m at my worst, that my husband will be there to pick up the slack and help me as best as he can. Sometimes that might mean that we don’t have the laundry done or we have a sink full of dishes for weeks, but we know in our hearts that we’re both doing our best at any moment and “our best” changes and evolves as we spend more time together.
The 60/40 rule is all about being confident that your partner is giving you their best each day, and that if you remain flexible on what your best is, you can never fail each other.
Your support means everything to us
Watching someone you love become dangerously ill is an incredibly hopeless feeling, and yet you do it with strength and love, supporting your spouse every time they’re in need. I always struggle with asking for help, and your spouse might too, so just keep reminding them that you’re willing to help and that it comes with unconditional love.
Marriage is beautiful, complicated, and inherently hard, so when you throw a chronic digestive disease like UC into the mix, all bets are off on what a successful partnership looks like. So as someone who is still in there, at your chronically ill spouse’s side, just remember that both of you get to define all aspects of your marriage and who you are to each other. And your spouse, who will always be a little more grateful than the average bear, will be so thankful that you’ve chosen to do life with them.
Hearts for days,
Jackie, Your Average Wife Living With UC