How to Tell Your Child That They Have a Chronic Illness

How to Tell Your Child That They Have a Chronic Illness

Having difficult conversations with your kids is a huge part of parenting that no one prepares you for.


When they start growing older and getting curious about life, they start wondering about how things work, and the more curious your child is, the more questions you will have to answer and things you will have to explain – from conversations about animals and the universe to questions about how did you make them. This is all part of parenthood. 

The key here is finding the balance between teaching them more about how real life works and being honest with them. Letting them carry more than their emotional capacity hinders their emotional development. And one of the most difficult conversations with them is telling them they will have to live with a chronic illness. According to The Centers for Disease Control and Prevention (CDC), more than 40% of school-aged children and adolescents have at least one chronic health condition in the USA. So, unfortunately, the possibility of having this conversation is not low.


So, before you break the news to your child, make sure that you are emotionally stable. Because for parents, getting news that their child has a chronic disease is one of the hardest things they will have to go through. You can help your child deal with the situation better when you have dealt with it healthily. When you are more composed, and in control of your emotions, you can better communicate with your child.


Now that you have taken time to consume the news communicate with your child. It’s not good for them when you don’t tell them anything, especially if they’re going for doctor visits and doing tests because they can sense that something is off. And if they don’t hear it from you, they are going to research it themselves or ask someone else, and you don’t want them to know from any other source before you. Also, their imagination could bring them to something worse than what is happening. 


Still, don’t completely ignore the resources available to help you deal with this situation. Although this is the first time for you to go through a situation like this, it’s not the first time their doctor has been through this experience with other parents. So, talk to your child’s doctor; they might have a better way for you to have this discussion. Maybe your child will need someone or a support person to talk to who isn’t you, and their doctor might offer to be that person.


After you have composed yourself, taken some time to let the news sink in, and planned how and when you will have this conversation with them, the way you do so depends on how old they are since different ages are in different developmental levels. 


If your child falls into the age range of five to eight years old…


They’re too young to fully comprehend the situation at this age, so you want to make things as simple as possible. They won’t understand how this is going to affect them in the future, so you want to make sure that they understand correctly and explain in the simplest way possible.


First, ask about how they’re feeling. If their facial expressions show that they are confused, ask them: “How are you feeling? What are you thinking? What is making you worried?” because you will never know how they’re taking this unless you ask. They might think that it’s their fault or that they did something bad, so it’s crucial to reassure them that it’s not and that you love them unconditionally.


Second, prepare yourself to answer tough questions because, most likely, they will ask you whether they are going to die or not. It’s tough for parents to hear something like that or even imagine the situation, but be prepared to answer these questions. Also, if they have been through a family member’s death, they are more likely to ask this question. They might also ask you if this illness means that you will go on with their life normally – like still playing with their friends, going to their training, and going to school.


They might also ask if this illness will go away on its own, do they need to take medicine, or if it will ever go away. So, prepare yourself for these questions and have ready answers that are simplified in a language your child understands. For example, you don’t have to lie to them and tell them it will go away. Tell them it won’t, but some things will help them feel better. 


Third, tell them what the next steps are. Explain to them that they need to take a certain medication and do some treatments. For instance, if they have a nervous system disease that needs plasmapheresis treatment, don’t tell them that huge word because they most likely won’t understand it, and it will only make them more worried; only tell them how this treatment will benefit their condition and will help them continue their life normally and play with their friends like they’re used to.


When giving out details, find a balance between being honest with them and allowing them to fully trust you and not seek more information from someone else, and giving them too many unnecessary details that will only make them feel worried and lead to even more questions. 


Fourth, you can use props like videos, children’s books explaining the illness, or even stuffed animals. Try to role-play the situation or find child-friendly resources. Even if you don’t use props now, they might come in handy in the long term when you want to discuss other treatments that don’t need to be discussed in the first conversation or if you’re feeling that your child isn’t comprehending the situation and that it isn’t the wisest idea to add more to what they can’t already sink in. 


Most importantly, reassure them that you still love them and that they didn’t contribute to this illness in any way, and that they are still normal children because you don’t want them to grow up with the idea that they’re different from the children around them.