Telling others about your IBD

Schedule a place and time

Schedule a place and time that will be relaxing and will allow you enough time to have a good conversation. Limit the interruptions. You and the person you are talking to should turn off your cell phones.

Write down what you want to say

If you anticipate it will be difficult for you to talk about your IBD, write down what you want to say beforehand.
What you write doesn’t have to be word for word. Jotting down a few thoughts is often enough.

Tell people what is helpful

Your friends and family want to be helpful but they may not know how to be. You can do them and yourself a big favor by providing some guidance about what is helpful and what is not. You will need to revisit these suggestions as you and your IBD change. Think about things people have said or done in the past which has made you uncomfortable. Tell your loved ones about them so they can avoid the same mistake. The same goes for things that have been said or done that were helpful.

Encourage questions

Encourage people to ask questions. People may not know what to ask. But let them know you are open to answering their questions. Of course it is up to you about how much you want to share.  Some people are comfortable sharing many details about their disease. Others may want to talk about their IBD in more general terms.

Invite others to accompany you to appointments

Being any kind of patient can be overwhelming and isolating. Because it is a chronic condition that few people know about, being an IBD patient can be especially difficult at times. Inviting a friend or family member to go with you to your appointments can be a big help. They can listen, take notes, and when it is appropriate, ask questions. Your friends and family will also gain a better understanding of what you are going through if they accompany you to appointments, even if it is just once or twice.  It is up to you, but people accompanying you to your appointment don’t need to go into the examining room. Sometimes just sitting with you in the waiting room can be supportive.

Think about joining a support group

Even if you are not typcially a joiner, consider going to an IBD support group. Everyone’s IBD disease is different. But you will almost always learn something new by listening to others at a support group. Support groups also help with the feelings of isolation many people with IBD struggle with. You will hear from others who are going through the same or similar things you are. That can be comforting.

Talk to a social worker


Social workers can help in many ways. They can provide you with information and steer you to resources. Sharing your concerns and worries about IBD often helps. A social worker will have suggestions, strategies, and insights that could address your concerns.