Staying Social With Ulcerative Colitis

Your friendships enrich your life. They’re good for your health, too. Studies show that people who have good friends and good relationships are healthier, happier and may live longer. That’s why maintaining your social life might be the perfect supplement to your ulcerative colitis care.

“Whether you have IBD or not, social isolation is not healthy for human beings,” says Marci Reiss, a licensed clinical social worker and founder and president of the IBD Support Foundation.

During a flare, you might feel like hiding at home, but ulcerative colitis doesn’t mean your social life and relationships have to end. Managing your friendships while managing your condition is a balancing act that you can learn.

Getting Support

You’re close with your friends, so it might help to tell them about your condition. That doesn’t mean you have to tell everyone, and you don’t have to tell them everything.

“Bathroom talk -- diarrhea, urgency -- is not easy to share, and no one is ever coached in how to explain this to people,” Reiss says. Her advice? Carefully choose whom you tell and exactly what you tell them.

You might feel that telling your friends you have ulcerative colitis is the same as telling them you have chronic diarrhea, but, says Reiss, “people don’t know what you don’t tell them.” You have all the control in how much you choose to share. “You can put on a happy face and say, ‘I’ve got this stomach thing that acts up once in a while, and I’m just not up for going out tonight.’”

With your most trusted friends, you might choose to share more. It could bring just the support you need. When Susie Janowski of Pocatello, ID, told her friends about her ulcerative colitis, she got an outpouring of support. “Anything you could do for a person, they did for me,” she said. “It makes you realize you’re not alone.”

If you’re not ready to talk about your condition with your friends, find someone you can share with. Support groups for ulcerative colitis and IBD are readily available on social media and in real life. “It’s amazingly therapeutic,” says Reiss. Sometimes group members get so comfortable and enjoy sharing so much, she says, “it’s like a comedy show in our support group.”

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Janowski, a self-described “social butterfly,” is a co-leader of her online support network. “There are a lot of good people in those groups. They’re very supportive; they try to help you out and share their experiences so that you can know what to expect with colitis.”

A word of caution about support groups: They should be supported by a health professional. “I’ve heard people in support groups convince others to stop meds, start meds, try this diet instead, definitely have surgery, or definitely not have surgery,” Reiss says. “The firsthand experience of another person who’s lived it is powerful, but it can be harmful.”

Dating

Telling your oldest, dearest friend that you have ulcerative colitis is one thing. Sharing that information with a boyfriend of girlfriend might feel like quite another. “If it’s someone you want to pursue a relationship with, you’ll need to tell them, because you need someone who can support you through this,” says Reiss.

It’s probably not the kind of thing you want to discuss on a first date, but you don’t want to save it till after the engagement either.

“It’s probably sometime after the third date, but long before things become serious,” Reiss says. “There’s a point where it’s a meaningful enough relationship that you need to share because this is a big part of your life, but at the same time you’re not so far into the relationship that the listener is going to feel betrayed that you withheld something so big.”

Reiss recommends not going into too much detail at the beginning. Share what you need to share at first and answer any questions they have. You can offer more details as things progress.

“If somebody bolts because they can’t handle it, yes, that’s painful,” Reiss says, “but consider it a blessing because that wasn’t the right person for you.”

Out and About

Once you’ve shared with your friends what you’re facing, planning social activities becomes more about logistics and less about trying to lie low. These tips might help:

  • Be in control of when you arrive and when you leave. You don’t want to rely on others for a ride home if you need to get out in a hurry.
  • Choose locations where you know you’ll have a clean, comfortable bathroom if you need it.
  • Scope out bathroom locations when you arrive.
  • Carry flushable wipes with you.
  • Ask your doctor about over-the-counter medications, such as anti-diarrheals, anti-gas medications, or digestive aids, that you can take before any can’t-be-missed social activities.
  • If you can’t go out, but want to see your friends, ask them to come to you.

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Ulcerative colitis may make your social life more challenging, but it shouldn’t make it feel impossible. If it does, talk to your doctor about how well your treatment is working for you.

As you venture back out into the social world, Reiss recommends that you remember this: “You are so much more than your disease.”

WebMD Feature Reviewed by Minesh Khatri, MD on October 14, 2018

Sources

SOURCES:

Marci Reiss, licensed clinical social worker; founder and president, IBD Support Foundation, Los Angeles.

Susie Janowski, Pocatello, ID.

Crohn’s and Colitis Foundation: “Living with Ulcerative Colitis.”

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