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How to Talk to Literally Anyone About Inflammatory Bowel Disease

We’ve all been there: “What’s inflammatory bowel disease?”

For those of us who even choose to disclose IBD and say the word “bowel” in mixed company, elaborating on what it actually means can be more than we’re ready to talk about. Simply disclosing our condition was already outside our comfort zone, and it was a huge step! But getting into detail? What’s too much? What’s too little? What’s too gross? What’s too complicated? While we appreciate the genuine curiosity and desire to understand, it’s a lot to thoroughly explain IBD without going overboard on unnecessary (or “embarrassing”) details.

Well, you don’t need me to tell you that you have nothing to be embarrassed about. In fact, owning and verbalizing your story can be incredibly empowering. Plus, in my experience, most people know someone living with Crohn’s disease or ulcerative colitis, so they aren’t totally in the dark about the symptoms. It’s understandable to be hesitant to broach the subject, but it’s also OK to give people the benefit of the doubt and use trusted friends and family as “practice subjects” when talking about your experience.

If you desire some helpful tips on how to start, continue, or even end the conversation, whether it be with a sibling, parent, teacher, colleague, supervisor, partner, friend, or your nosy neighbor, here are some suggestions.

  1. Bring it up casually. Instead of dedicating an entire conversation to the subject, find a way to casually put it into conversation that’s already happening. This helps you get it off your chest and also provides the recipient an opportunity to inquire further. If they choose not to, don’t be offended. Move on with the conversation and save your next attempt for someone else.
  2. If they ask, have a set response to start. I always respond to “What is UC?” with the same basic response. It’s an autoimmune disorder that affects my large intestine. I’ve had it for 20 years. It’s why _________. You can fill in the blank by relating it back to whatever brought it up in the first place. This takes the pressure off around coming up with a response on the fly.
  3. See if they’re familiar with Crohn’s or UC. As I mentioned earlier, many people have at least heard of one or both conditions. If they know the symptoms or basic definition, great! You can assume their general knowledge is enough to skip over the introductions about bathrooms. 
  4. Ask if they have specific questions about it. Some people want to hear about the symptoms, while others want to hear how it impacts your specific life. Some want to know about how to exercise with it; others want to hear about diet. By meeting their interest where it’s at, you’re keeping their attention and sharing your own story. 
  5. Don’t be afraid to skip queries. If your company asks something you’re not comfortable discussing, don’t hesitate to say so. I usually say something like:
    “That’s such a good question. That’s something I don’t really like discussing, but I’m happy to send you more information on it if you want.” Then you can send them to The Mighty, relay some helpful articles, or refer them to another person who might want to talk about it. 
  6. Have an internal time limit on the topic. Rather than spending an entire hang session talking about IBD, cap that topic at 15 minutes (or whatever works). That way, neither party feels overwhelmed.
  7. If they’re an open book of curiosity, be an open book of sharing. A lot of people just want to listen to your experience. If your people are those people, take the opportunity to simply share whatever is on your mind. It can be liberating to be able to speak freely about IBD to someone who is truly there to hold space.
  8. Have compassion to receive compassion. Your sharing about IBD might bring up emotions in the person you’re speaking to. Maybe they can relate, or perhaps they know someone who is struggling too. Know that your story is giving them space to be vulnerable, and have compassion for that. Remember: compassion doesn’t mean you need to “fix” them. It means you can listen, and they can listen, too.
  9. Laugh if it’s funny, cry if it’s not. Emotions can run the gamut when it comes to talking about IBD. For me, 20 years of talking about it has made it easier for me to laugh at myself and really hold space for the other person to ask questions or process what I’m sharing. If you’re not there yet, that’s OK! Crying is also very valid when discussing something as difficult as IBD. 
  10. Write it down, if that’s easier. I’m a writer, so writing something out is easier than talking in person. If people want to inquire about IBD but aren’t ready to speak in person, offer an email, text, Instagram message, or something else that still allows the connection but keeps things anonymous behind a screen. 
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