Talking to My Child About My IBD Part 2 - How to Do It

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. These two articles look 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.

What should I tell my child?

What you tell your child should be appropriate to their level of understanding and how much your child will be able to understand tends to relate to their age. All children are different, but they may show typical reactions depending on their age:

Babies and toddlers:
Very young children will not be able to understand any sort of explanation, but older toddlers may start to  ask questions. A simple statement, such as "Mummy is feeling poorly" should be enough.

3-5 years:
Pre-school children are more aware of things happening around them. They need simple explanations to explain changes. You may find it helpful to do this with pictures and drawings. Young children may blame themselves for their parent's illness, so need reassurance that it is not their fault. They may also be scared of separation from their parents, if for example, there is talk of you going into hospital, so they will need  reassurance about this too. At this age, they may start to worry about “catching” IBD off you, so you may need to help them understand that IBD is not contagious.

6-11 years:
Primary school children are able to understand more complex explanations. They may start asking questions about death. It might help to reassure them that this is highly unlikely. They may also want to feel involved, and want to know how they can help you. It may help to inform your child's school teacher if you have told
your child about your IBD.

12+
Secondary school children are starting to become more independent, and may need encouragement to talk about their worries. They may start to want more complex explanations, and to worry more about you. However, try not to overburden them with your worries too much, especially things they can do little or nothing about, such as money problems.

How much information should I give?

According to your child's age and ability to understand, you may want to talk about particular aspects of your IBD. You may want to explain the treatment that you are being given. You could talk about any side effects you may have. You could explain that there are times when you need to rest more than usual.  Explaining to your children about your feelings and emotions can be as important as giving them factual information. It may be helpful to explain that IBD makes you more tired and easily irritated, but this does not mean that you don't love them.

If you have to go into hospital for surgery, you may wish to prepare your child. You may also want to let your child know who will look after them while you are in hospital. Explain why you need to go, what is going to happen, and how it will affect you afterwards. You could also talk about what they will see in hospital if they come to visit you, for example drips or oxygen, so they are prepared for what they may see. Hospital staff may be able to help you explain what will happen. You may find it helpful to look at our leaflets
Surgery for Crohn’s Disease or Surgery for Ulcerative Colitis.

Some final points:

Simple and straightforward language is the most helpful for children. Ask them what they think IBD is, and correct any misunderstandings they may have. Listen to them – it lets you know what they can cope with. Ask them if they are worried about anything in particular. Try and answer their questions simply. Don't
be afraid to say that you don't know the answer to all of their questions. Be honest and try not to make promises that you may not be able to keep, say "I will try to..." or "think I will be able to..." Try and leave them feeling that even though you may be ill now, there will be better times.

Some suggested ways of saying things to young children:

• "I have an illness. It is called Ulcerative Colitis/Crohn's Disease. The doctor is giving me medicine to help me get well. Sometimes I feel ill or tired and sometimes I feel fine."
• "The illness makes my tummy sore and makes me go to the toilet a lot, which can be awkward."
• "Being ill makes me feel upset. I may seem tired and cross sometimes, but it is not your fault and I still love you."
• "My tummy is red and sore inside. The tablets I am taking are helping to make it better. It is an illness that can get better for some time, and then get worse again, but it probably won't go away altogether. If you have any questions about it, you can ask me."

We have a range of publications that you may find helpful to look at when you are explaining things to your child. For more information, contact the Crohn's and Colitis UK Office (0845 130 2233) or see our website
www.crohnsandcolitis.org.uk . All our information sheets and booklets can be downloaded from this site.