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Texas Children's IBD Center

 


To tell or not to tell: Telling others about your IBD

You know what you have, but do you tell others? If so, whom should you tell and how should you tell them?

Only you can make these choices. If you’re worried about how people will react, limit whom you tell to people you trust: close friends, extended family members or coworkers. It’s easy to fear the worst, but telling people you care and trust about your IBD might make your life easier.

In the case of school or work, it may be necessary to confide in your professor or boss, especially if you’re missing multiple days or not completing assignments due to flare-ups or doctor appointments. You don’t want to fail a class because you missed an exam and are too embarrassed to tell your professor you have IBD. The same goes with work. If you’re not able to complete a project or have to call in sick often, telling your boss what you’re going through may save your job. Class or work may require a note from your doctor explaining why you were out.

Letting those around you know what you’re going through can be as simple as saying, “Oh, I just take a lot of medicine” or as thorough as explaining your entire illness. However in-depth you go, making a connection and helping others understand you better can relieve the stress and awkwardness of adjusting to a new situation. Who knows? You might even find that your roommate, coworker or friend has another condition and was too scared to tell you.

Parents

Part of gaining independence is taking responsibility for yourself from your parents. It can take a long, long time before your parents realize that their role in your care has changed. Here are a couple of tips for making their transition a little easier:

  • Privacy: Let your parents know whom you’d like them to tell or not tell about your IBD and how much you’d like them to know. 

  • Intrusion: Assign tasks to your parents and to yourself (and do them) so they have a clear understanding of which responsibilities they can let go. For example, ask them to pick up your medicine after you call the pharmacy and order the refill. 

Friends

When you’re starting a new job or school, it can be difficult to build and maintain friendships, especially when you need to focus on recovering from a flare-up or you can’t go out as much as everyone else. You might find that your friends dwindle in number when you’ve been sick for a long time and haven’t seen or talked to anyone. Having less energy and time for friends can push you to make a decision: swapping quantity for quality. Having a support group is a large part of healing -- we all need a little lift when we’re down -- but when you haven’t yet had the time or opportunity to foster strong friendships, how do you maintain your social support?

The key is to choose whom you want most as a friend and then to make sure you maintain some contact with that person during your ups and downs.

If you start disappearing from activities, turning down invitations or missing days when you would normally see your potential friends, those who don’t know your situation might feel ignored and ignore you in return. To prevent that lapse in communication, try writing a quick note or making a couple of phone calls when you know you’ve been out of sight; reach your new friends before “out of sight, out of mind” sets in.

If you’re going to the hospital where it might be harder to contact people, you might decide then to inform your chosen friends about what IBD is for you. Then they can make the decision to support you or to leave you. As tough as it sounds, your hardest times will make your best friends for you.

Try to remember that you’re not the only one with problems. Friends you thought ditched you may be dealing with their own situations and as a result have have not made efforts to keep in touch. As angry as you may be, a second chance might put your friendship back together.   

Knowing others with IBD also can provide a wonderful support system when you’re sick and when you’re well. It’s great to meet people who know exactly why your cheeks are the size of apples and why you have the best bathroom library in the country. Contact your local hospital or the local Crohn's and Colitis Foundation of America chapter for a list of IBD-related people and events. Check out the online chat groups and message boards for at-your-fingers convenience. 

 

 


 

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