How to Talk About Ulcerative Colitis
Sure, your family knows about your ulcerative colitis (UC) diagnosis. But how to explain it to people outside your immediate circle? Who do you tell and how do you bring it up? Will you scare off your date? Will it change how your coworkers think of you? Sharing a chronic condition with a broader group of acquaintances is a delicate dance. We asked doctors and patients alike for their best advice on talking about UC to people beyond your family.
Who Should You Tell?
Ultimately, the decision to explain your UC to others is your own, says David M. Poppers, M.D., Ph.D., a gastroenterologist at NYU Langone Health in New York. It’s OK to divulge your chronic illness to everyone. It’s also OK not to. Just know you’re not alone—about three million Americans have inflammatory bowel disease (IBD). “I always tell patients, you probably know somebody with UC or Crohn’s, you just don’t know that you know them,” he says.
What’s the “Right Time” to Explain UC?
One way to gauge the best moment to discuss UC: “Ask the person you’re sharing it with if it’s OK with them,” says Niseema Dyan Diemer, a therapist who specializes in trauma and anxiety in New York City. Try: “There’s something I’ve been wanting to talk with you about related to my health—is now a good time or should we talk later?” Sometimes, people aren’t in the right mind frame for that conversation, says Diemer, so this gives both of you the chance to check in before proceeding.
Details or No Details?
Keep it simple, suggests Mandy Patterson, 30, of Naperville, IL, who has UC. When she talks with people outside her family, she starts by saying she has a chronic illness called an IBD. She asks if the person has heard of Crohn’s disease, another IBD, which is often featured in treatment ads on TV. She explains that UC is similar, but inflammation is in the lower gut and symptoms can include diarrhea and abdominal pain. “I try to keep it high level, depending on the relationship,” she says. Let’s dig into some of those relationships.
How to Explain UC to… Friends
Telling friends early on is key to maintaining good friendships, Patterson has found. You have little to lose: If someone can’t empathize with what it’s like having a chronic illness, “that’s not really a friendship that I want to pursue,” she says. “If they’re not there for it, it’s such a big part of who I am now, then that’s not really going to work out for me.” Stick to a broad overview of what UC entails first, providing more granular details if they ask.
How to Explain UC to… Your Date
Explaining UC to romantic partners early on might help you learn who’s supportive—and who isn’t. If you’ve gone on a few dates and this is someone you could see being with for a while, “bring it up before you invest too much,” says Diemer. Patterson’s now-husband knew about her UC, researched it, and doubled down on his questions on their second date. “That’s such a critical component of chronic illness—whoever you choose to be with, they need to understand what you go through,” she says.
How to Explain UC to… Your Boss
Telling your employer could be helpful, especially if you need UC-related time off. How to disclose? In a one-on-one meeting, Dr. Poppers suggests starting by saying how much you enjoy working there, how proud you are of your contributions, and that despite having this condition, you feel lucky that it is well-managed. “Then add that there may be times when that’s not the case,” he says. “You can say, ‘I’ll keep you in the loop so that you can prepare, but I’m taking care of myself and can do the job as well as anyone else—as you’ve seen.’”
How to Explain UC to… Coworkers
Telling coworkers early on can make your work life less stressful if you need a break thanks to UC, Patterson points out. Maybe they can help you make a deadline or take notes at an important meeting. Honesty really is the best policy, says Pradeep Kumar, M.D., a gastroenterologist, partner at Austin Gastroenterology, and clinical professor at the Dell Medical School at the University of Texas in Austin: “You don’t have to come clean to everybody—just everybody that matters.” Coworkers definitely count.
How to Explain UC to… Housemates
“If you’re sharing close quarters with somebody, you have to let them know,” says Patterson. She contrasts her experience living with others during her college years versus graduate school: In college, she wasn’t forthcoming about her illness with others and it caused confusion and bad feelings with her undergraduate roommates. As a graduate intern, she told her suitemates, “I have IBD. I’ll have to use the bathroom a lot.” And they split a bathroom to provide her with her very own.
How to Explain UC to… Your Trainer
Exercise has been shown to benefit those with IBD—but your ability to work out might vary on any given day. For Patterson, explaining the physical manifestations of UC to personal trainers has been an important part of maintaining her health. “I’ll say, I have ulcerative colitis, there are certain things that I can and cannot do,” she says. “Sometimes, they’re like, go harder. And I’m like, that isn’t an option.” She’ll explain, in more detail, exactly what UC is so they understand her tolerance and endurance level better.
Remember, It’s Your Choice
Your health is your business, and if you don’t want to share it with others, you don’t have to. Figure out who you are comfortable talking to, and for others, a simple, “I’m not feeling so great today” is fine. Your decision about sharing may change in the future, and that’s OK, too. And remember, three million people in the U.S. have IBD, so don’t be surprised to learn someone you’ve been hesitant to talk to knows exactly what you’re going through—because they're going through it, too.
IBD Numbers: Centers for Disease Control and Prevention. (2020.) “Data and Statistics. Inflammatory Bowel Disease Prevalence (IBD) in the United States.” cdc.gov/ibd/data-statistics.htm
Overall Info on UC: Crohn’s & Colitis Foundation of America. (2014.) “The Facts About Inflammatory Bowel Diseases.” crohnscolitisfoundation.org/sites/default/files/2019-02/Updated%20IBD%20Factbook.pdf
UC Symptoms: Mayo Clinic. (n.d.) “Ulcerative Colitis.” mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326
IBD and Exercise: Frontline Gastroenterology. (2014.) “Inflammatory Bowel Disease and Exercise: Results of a Crohn’s and Colitis UK Survey.” fg.bmj.com/content/5/1/44