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Disclosing your IBD to Others

Updated: Nov 3

by: Barbara Storch


First things first – deciding when, what, and to whom to disclose your IBD diagnosis can be tremendously challenging. Overall, your information about your IBD belongs to you! You get to decide when and how to share it.


If you do decide to disclose your diagnosis, the purpose of this blog post is to offer some strategies to think through that may help facilitate a disclosure conversation. Please know, none of these strategies are guarantees for a supportive disclosure. So, again, the decision about taking the time to have a discussion disclosing your IBD is your decision!

Trying to Help Others Understand


Share your day-to-day

Once you have shared that you have IBD, one thing that may help others understand a bit more about your diagnosis is if you share how your IBD affects your day-to-day. Perhaps you might want to share how fatigue sometimes makes it difficult to join for nights out, parties, etc. Or you may want to share why you prefer to eat close to home, in case you experience urgency. Connecting your experience of IBD to your day-to-day can be a helpful way for others to understand more about your lived experience.

Be concrete and ask for what you need

If you are disclosing because you need something from others (e.g., logistical support, institutional support, emotional support, etc.), consider using “I” statements rather than “you” statements! “You” statements can often prime your listener to feel defensive and less open to take in information. So, take a moment and think through what support you need, and how you can clearly ask for it. Some sentence-starters may be:

  • I am telling you this because I will need...

  • I would feel best supported if we could...

  • I would love it if we could...

  • My IBD makes it so that.... As such, I will need....

Supporting the supporter

Sometimes, others may want to be supportive but don’t know a lot about IBD! If the person you’re speaking with wants to learn more, you can always point them to great existing online resources, like this one focused on supporting loved ones with IBD.


Open the floor for a Q and A

You also may want to consider opening up the floor to questions others have for you! Again, consider framing this from an “I” perspective – something like “I’d love to answer any questions that you have about my IBD! I hope this may help us develop a shared understanding.” You may want to prepare answers to common questions that they would likely ask (e.g., Is it a lifelong condition? What does your treatment look like? How did you get it? Is there a cure?)


Helping Yourself

In addition to talking about your IBD with others, sometimes you may feel like you’d like to connect with others you know have the same lived experience as you. Consider checking out some IBD support groups (you can use this Support Group Finder to start). You can also find IBD-specific support from social media – places like Instagram accounts, Twitter, or Facebook groups!


Who Does Feel Helpful?

Disclosure can be tiring! As such, it can also be helpful to take a moment and take stock of those in your life who are currently aware and supportive of you and your IBD. You also may want to take a moment and ask yourself – who do I feel support from in my life right now? Consider first of all expressing gratitude to that person/those people, and then consider turning to them first when you need support in the future.


Resources

https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/supporting-someone

https://www.crohnscolitisfoundation.org/find-a-support-group


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