Communicating to Others about IBD

Many children and teens tell us they worry about telling others about living with IBD. They are concerned their friends will treat them differently, won’t like them anymore, or will think IBD is contagious.

You can help your child prepare to tell friends about IBD. Here are a few tips:

• Listen to what your child is worried about when telling others. Don’t dismiss their worries — your child’s feelings are important.
• Some children are very open and public about their IBD. They are fine doing a health project on IBD to present to their classroom. Other children are more private. If your child is shy about telling others about IBD — help your child figure out who might need to know. Perhaps their closest friends, or a friend they participate in sports with or hang out with a lot.
• Discuss with your child when they might tell their friend and role-play how the conversation might go. It can also help to have “go-to” answers to questions that others are likely to ask (see below). Your child can practice answering these questions first with parents, family members or others they are comfortable with.
  • Is IBD contagious?
  • Why do you have to go to the bathroom a lot?
  • Will your IBD ever go away? Will you ever get better?
  • Why do you have to miss school sometimes?
  • If you have IBD, why don’t you look sick?
• Ask your child if it would help if you — as the adult — contacted the parents of their friends first. This may make it easier for your child to talk to their friends about their condition.
• Discuss with your child who you want to talk to about their IBD. You may be friends with the parent(s) of some of your child’s friends. You don’t want to surprise your child by telling one your friends, who then says something directly to your child without first giving your child a heads-up.
• Many children (and adults) will learn about IBD and how to react to it by the tone you and your child set. IBD is nothing to be ashamed of. Take care of IBD as “something I always do” and then go about your usual business. IBD does have to be managed, but the message is that you are able to do it and continue with school, sports and life in general.