Ask the Advocates: How Has UC or Crohn’s Affected Your Relationships?
Living with a chronic illness like Crohn's or ulcerative colitis (UC) will test you. It will test your pain tolerance, your patience, and your relationships. Your families, friends, and spouses all feel the effects IBD has on you. How they respond might strengthen your bond, or it might damage it.
Whether it is finding a partner who accepts your condition or maintaining friendships when symptoms get in the way, Crohn's and UC can have a real impact on relationships.
So we asked our advocates: How has UC or Crohn's affected your relationships?
The impact of IBD on relationships
"UC has actually affected my relationships positively. I have learned that the only people I enjoy having in my life are those who can accept my illness and celebrate the good times and mourn the hard times with me. I met my now-husband years after I was diagnosed with UC, and my first flare was a test for our relationship. He continued to love me, and we continued our relationship. Similarly, my friends are tested when I flare. If they don't understand why I can't go out with them after I've explained it, then it means they don’t have the level of compassion I now demand from people. Though this has meant letting go of some people in my life, I feel that those who remain in my life are the best people to nourish me." –Eshani
"Relationships are hard enough as it is. Throw in a chronic illness and the roller coaster ride of IBD with the flares and remission, and I thought I would be alone forever. I lost my longtime girlfriend right away because, in her words, she couldn't handle it. I became an introvert and stayed home all the time. Never went out. I was too embarrassed and in pain most of the time. I was always canceling plans. I lost the majority of my friends. Fast-forward to 10 years after diagnosis: I met my wife, and she didn't care about my health issues. We've been together for 25 years, married for 20, and we have 2 kids." –Vern
"During my 20s, I tried to 'hide' my UC from my personal and professional relationships. I never discussed it because I was too embarrassed about it. I thought, 'Who’s going to like me with IBD? Won't other people laugh at me?' I also scolded and ridiculed myself over my digestive issues: 'Why do I have diarrhea all the time? Why won't this rectal bleeding stop? Why can't I just be normal?' What I didn’t realize at the time is that I was adding unnecessary stress to my colitis. Now that I'm in my 50s, I’m no longer embarrassed nor do I chastise my body for being the way it is. I just embrace the body I have and say, 'Phooey on anyone who thinks negatively about me because of UC. That's their problem!'
Those of us with UC need to make our lives as comfortable as we possibly can. That involves informing and educating those near and dear to us about the roller coaster ride of living with IBD. Once I opened up and became more vocal about colitis, I noticed my body didn't flare quite so much. When I accepted it and took my attention from it, my relationships with others improved. My husband credits himself for reducing my UC flares. I'll just let him keep on thinking that. Wink, wink." –Traci
"In a strange way, ulcerative colitis has both negatively and positively impacted my relationships with others. On the negative side of things, when I'm experiencing a flare or dealing with residual symptoms like fatigue, it can be hard to feel social and want to spend time with others. The symptoms can be so overwhelming that it takes a toll on my energy levels, and I might find myself canceling events with friends. As someone who already tends toward introversion, I have to be extra careful to not isolate myself when I'm not feeling well.
On the other hand, in the relationships where I’m able to openly talk about my ulcerative colitis, I've felt a closer and stronger bond. For example, sharing about the impact of my illness has often made me feel more supported and connected to my partner. I remember being so nervous to tell my partner about my ulcerative colitis, and I had such a sense of relief when he responded with kindness and understanding. It has also helped that I have friends who struggle with GI disorders, and we're able to lean on each other for support and become closer through that connection." –Christal
"My son was 12 when he was diagnosed with severe sudden onset Crohn's. He got very thin and pale very fast, which was terrifying for me and everyone who loved him. There was the tendency to treat him as fragile — which he was — but he was also a kid who wanted to talk about cars and SpongeBob and when he'd be able to swim again. He wasn't as afraid as the rest of us were, especially since he started feeling better once he began his initial treatment.
My son is on the autism spectrum, and he tends to hyperfocus on what interests him and let the rest go. When he was first diagnosed, he was put on a large dose of prednisone, which made his face puffy. For me, it was a visual reminder of how sick he was. But he barely noticed. It was his ability to deal with his illness and get on with things that helped those around him cope.
The hardest part for him was missing weeks of school when he came out of the hospital. He felt isolated and left out and worried about missing field trips or his chance to participate in the school play. But his teachers were great and regularly called to check on him. His classmates sent get-well cards, and that cheered him up a lot, too. And when he eventually went back to school, he was treated like the rock star he knows he is! Like his family, his teachers took his lead and fought their instinct to coddle him. I believe that his ability to keep his illness separate from who he is at his core has gone a long way toward his continued healing." –Jennifer (caregiver)
IBD and relationships: share your experiences
How has UC or Crohn's affected your relationships? Can you relate to any of the positive or negative impacts our advocates have experienced? Comment below or share your story. We want to hear from you.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?