Talking to My Child About IBD Part 1 - Should I/When/Where?

If you are a parent with Ulcerative Colitis or Crohn's Disease (collectively known as Inflammatory Bowel Disease or IBD), you may be concerned about whether to talk to your child about your illness. Some  parents may wish to keep their illness to themselves, feeling that it is better for their children not to know about it, particularly if the condition is mild. Other parents may decide to tell their children about it, especially if their illness is affecting the family. This series of articles looks at why it may or may not be a good idea to
talk to your child, and suggests ways in which you can go about this.

Should I tell my child?

What are the effects of not telling my child?

If your IBD is not severe, or you are in remission, you may feel that it is not necessary to tell your child. You may also decide not to worry your children, particularly if they are young or sensitive. However, with some children, not telling them can cause problems. Many children are very sensitive to tension and stress, and even young children may sense that something is wrong.

If your child realises that you are unwell, the fact that you aren't telling them anything may make them misinterpret the situation. What they are imagining may be far worse than the truth. The fact that you are not talking about it may suggest to them that it is a subject too terrible to talk about, and they may even believe that you will die from your IBD. Some children might worry that you have cancer. Also, some children can feel deeply hurt if they are not told about what is happening. It can make them feel very anxious and left out, even unwanted. If they feel that you have deceived them, they may be more distrustful of you in the future.

Some children might start blaming themselves for their parent's illness, especially if their parents aren't talking
about it. Children often think differently from adults. Many young children have simple cause and effect logic. For example, they may think "I was cross with Mummy when she told me to pick up my toys. Then she was ill. Maybe I made her ill." It is important for children to understand that your IBD is no one's fault.

What are the effects of telling my child?

Telling your child that you have IBD should help avoid problems such as those mentioned above – and can also have positive benefits. Parents often underestimate their child's ability to cope with the truth. Telling your child can help to build a strong relationship of trust, making them feel included and valued. It can also make your family feel closer, and you less stressed, especially as your children will be able to understand why you sometimes cannot do things, and help you when you are feeling unwell. Once you have told your child, you will not have to watch what you are saying all the time, or perhaps feel secretive and isolated within your own family. This can make you feel more happy and comfortable.

Dealing with IBD in a family can also be an opportunity for children to learn about the body, treatment and healing. They can learn about how strong people can be during hard times, and how to deal with difficult things.

Should it be me who tells my child?

As a parent or carer, it is usually best if you tell your child, if you feel up to it. It may reassure your child if it is you who tells them, rather than someone else. You may find it difficult to talk about your illness, but it is fine to show your feelings and emotions. If you cry, you could explain that it is part of your illness. Seeing you cry gives your child permission to cry too. Sharing your feelings in this way means you can give your child more support. However, try not to reveal acute distress because this may upset and worry your child.

You will know if you can be the one to tell your children. If you do not feel up to it, or feel unable to talk about your IBD without becoming really upset, then your partner or another close relative such as a  grandparent, could do it. It is important that you know how much your child has been told, so it may be helpful if you are there as well. Your child will also probably find it less frightening if you are there to reassure them.

When should I tell my child?

You will need to decide when your child is able to understand what you want to say to them about your  illness. If appropriate, you may want to explain what is wrong soon after being diagnosed with IBD. You  don't have to tell them everything at once; you may wish to give a bit of information at a time.

Try and choose the time you are going to tell your children carefully. If you can, find a place where you will not be interrupted, and tell them at a time when you are not in a hurry or stressed. A formal discussion may be intimidating and alarm your child. If possible, talk to your child when they are relaxed. If you have more than one child, you can tell them together or separately. If you do tell them separately, try to avoid leaving a long time interval between telling each one, or the last one may wonder why they were left until the end.

Where should I tell my child?

There may be particular places where you feel more able to talk freely with your child, and they might find it easier to talk about what's on their mind. This may be during bath time, or during quiet story time. Try to avoid telling your child before they go to school in the morning, because they will not have time to ask questions. If you do chose to talk to your child at bed time, try and allow time for them to think about what you are saying, and to ask questions about any aspect that is worrying them. Spending time with them before they fall asleep should make them feel supported.

Coming up in Part 2 - What to say and how