What It's Like Being Married to Someone With UC
I met my husband in 2013, six years before we got married and eight years before we had our son. In that time, I only had one major flareup of my ulcerative colitis (UC)… and it was six months before our wedding.
In the time surrounding that episode, my husband was exposed to a lot of the positives of UC. He met many of my friends that I made through the foundation, he witnessed me celebrating accomplishments as a person living with a chronic illness, he watched me give speeches, and he made sure I always had toilet paper in my hiking pack.
However, if you live with UC (or any chronic condition), you know remission days are still days with a chronic condition. If it’s not impacting me physically, UC is heavy on my mind, whether it’s flare fear, worrying about a friend in the hospital, wondering if I can break free of this conversation for the bathroom… the list goes on.
Having a supportive, understanding partner through those moments is just as key as having someone through the flares. That’s why it can be so important for someone living with a chronic illness to ensure the people who support them have support themselves.
But who am I to speak for my husband and relay what helps him on my hardest days? I decided to interview him, and these were the main takeaways from our conversation.
He had no idea what UC was
“I didn’t look into it much because as soon as you said you [lived with it], I started meeting all of your Team Challenge friends. I learned from them.” Including my husband in my fundraising and half-marathon training with Team Challenge, through the Crohn’s & Colitis Foundation, helped him see the positive aspects of UC.
He didn’t understand the ‘cons’ of it at first
“I didn’t understand the ‘limitations’ if you get sick, until you got sick.” To him, the hardest part was not being able to help make me feel better. “It’s not like a broken bone; you can’t just put a cast on and wait for it to heal.”
Hearing other stories of flares helped prepare him
While I have a mild case of UC, hearing stories from other Team Challenge participants about their flares helped him prepare and know what to expect.
Flares are moments of opportunity, not expectation
This is a mindset that we both adopt on a daily basis, but for him, remembering it during my flareup helped a lot. “Be thankful that you can go get that cup of coffee but don’t expect to get that cup of coffee.”
He never doubted wanting to be with me
I had a former boyfriend’s mom once suggest that it was too hard to be with me, so this sentiment means the most. “I never had any doubts about us being together due to colitis; when we met, you were in remission. We were both really active too.” And when it comes to me flaring again, “We cross that bridge if/when it comes.”
Never demean the other person
“One thing I’ve learned is that I can stop and take bathroom breaks too. If that helps you feel less embarrassed about stopping a lot, then I can just stop too.” He also says that it’s important to support your partner through all the little things they need to do to feel comfortable going out with UC. “Know where the bathrooms are for them.”
Be open about it with others
This goes both ways. “It’s an ongoing conversation in our relationship, and I think that’s important. Don’t hide it from your partner.” My husband, a recovering alcoholic, says it’s similar to why he goes to AA — why go through it alone when you can go through it with friends?
Don’t feel guilty for taking care of yourself
“I do need to take care of you, but I also need to take care of myself. When I play soccer, I come back a better person.” He says that it’s important to be patient and flexible, especially when your partner is flaring, but also don’t be afraid to voice that you need your alone time. “I don’t think that’s selfish at all.”