When you have a chronic illness, like Inflammatory Bowel Disease (IBD), it can be hard to know when to discuss the illness with your children. Obviously the age of your children and their maturity to handle a situation like that all play a role in how and when you tell them. It is important, however, to tell them something.
While you don’t have to give them more information than is age appropriate — not telling them just leaves it to their imagination which can be very hard for them to process and may even make them scared or think they did something wrong.
One of the most important ways to help your child feel comfortable and less afraid of your illness is to get a grasp on all of the diagnosis, treatment, and prognosis information before you talk to them. If you are confused and unable to answer even their simple questions, it will lead to even more confusion. But, should you get a question from your child that you don’t know the answer to, don’t make one up. Just let them know: “That was a very smart question and I will definitely find out the answer and let you know.”
According to American Family Physician, once a child is of preschool age (or older) it is time to start informing them in an age appropriate way about your illness. For a preschooler it may be as simple as saying:
“Mommy has an issue with her intestines, which are connected to the stomach. It’s called IBD. Sometimes I feel bad and have to spend a lot of time in bed or in the bathroom, like you would when you have a stomach bug. But, don’t worry, mommy isn’t contagious, which means you can’t catch mommy’s illness. Mommy has a really good doctor who will help keep me feeling as good as possible. Sometimes that means taking medications or visiting the hospital. Do you have any questions?”
Older children may have a lot of questions and you can get as in-depth as you feel is appropriate for their age, temperament, and tendency to worry. If any of your children are having issues coping with your diagnosis or treatment, don’t ignore it. There are school counselors as well as hospital social workers who can be very helpful in gently explaining the issue to your children and also looking out for any signs that your child is depressed or having difficulty accepting the illness.
Sometimes it can be very helpful for a child to speak with a group of peers who are going through the same thing. Again, the school counselor and hospital social worker should be able to help you find a peer group to give them the same-age support they need. If you have a friend with similar-age children, it can even help for them to start an email or pen-pal type of communication to deal with their feelings.
Remember, children are not small adults and their understanding of illnesses can be quite different — especially if they have seen an older adult, like a grandparent, go into the hospital and pass away. No question is a stupid one and they should know that they can come to you with any question they might have. A little reassurance from you can go a very long way in helping them cope with your disease. I was told by a counselor that the “best thing for your kids is to see a happy mommy.” So far, that has proven true for me.
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Jennifer Rackley is a nutritionist and mother of three girls. Two of her children have dealt with acid reflux disease, food allergies, migraines, and asthma. She has a Bachelor of Science in dietetics from Harding University and has done graduate work in public health and nutrition through Eastern Kentucky University. In addition to writing for HealthCentral, she does patient consults and serves on the Board of Directors for the Pediatric Adolescent Gastroesophageal Reflux Association.