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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. There will be no ‘perfect’ way to tell your child. But, to make you feel prepared, it may be worth practising what to say beforehand, and perhaps thinking about how you may respond to questions they could ask. See the section ‘How to tell your child’ later in this information sheet, which may help you with this. All children are different, but they may show typical reactions depending on their age.
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.
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 visual tools such as 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 from you, so you may need to help them understand that IBD is not contagious.
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. You may wish to inform your child’s school teacher if you have told your child about your IBD.
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 own concerns, especially things they can do little or nothing about, such as money problems. If you know they use the internet, you may wish to bring this up in the conversation and suggest you look up IBD together as a way of explaining it.
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 prefer to give a bit of information at a time. This will give them time to absorb what you have told them, so that you can return to the conversation at a later date when they may have thought of questions they would like to ask.
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 stressed or in a hurry. A formal discussion may be intimidating and alarm your child – so if possible, talk to your child at a time in your routine which is familiar and secure so that they feel relaxed (see below for some ideas). If you have more than one child, you can tell them together or separately. If you do talk to 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.
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, maybe after school or teatime. Try to avoid starting a conversation about your IBD when you feel pressured for time and there is not an opportunity to ask questions. This may be just before they have to go to school in the morning, or it might be at bedtime. If it seems best to tell your child at bedtime, then make sure you allow 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 may make them feel supported.
According to your child’s age and ability to understand, you may want to talk about particular aspects of your IBD. For example, you may want to tell them about the treatment that you are being given, how this makes you feel, and perhaps any side effects it may have. You could then talk about why there may be times when you need to rest more than
usual.
Explaining to your children about your feelings and emotions can also be very important. For example, it may be helpful to explain that your IBD makes you more tired and easily irritated, but this does not mean that you don’t love them. You may wish to tell your child that IBD is a fluctuating condition and it may be ‘up and down’. If they do not understand this, they may make assumptions based on how you are now, not realising this may change. It may be worth talking about this with your child so that they understand that your IBD will not always affect you in the same way, and that you will have good days and bad days.
If you have to go into hospital for surgery, you may wish to reassure your child by talking through what might happen. You could start by discussing 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 might 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 and hospital information sheets may be able to help you explain these sorts of details. You may find it helpful to look at our information section Surgery in IBD.
Copyright 2024 IBD Clinic.