The hardest part about having a chronic illness and being a mother was the fear and confusion it created for my children. It was heartbreaking to have to look into my sons tear filled eyes and tell him that try as I might, there’s a chance I might not be around as long as we would hope. Even at the tender age of 3, he had been paying attention to what us grown ups were talking about and it didn’t take him long to figure out that his beloved ‘Mommy’ was sick.
I still think back at how confused I was as an adult trying to grapple with my own diagnosis and how much more confusing it must have been for him. How could I have missed that?
It wasn’t the only time he asked or that I answered with the truth. Instead of sugar coating or lying to him about my illness, I decided to just be honest. Now, when my younger son starts asking questions, I hesitate. While my older son needed those answers, my other son is much more sensitive. What’s important to understand is that everyone deals with chronic illness differently. Keep this in mind when communicating with children. Every child is different and requires a different approach.
When people ask how I talk to my children about my illness, or for advice on how they should, I tell them to do what’s right for them. There is no one size fits all in this situation. Every child and every family is different. I do suggest making some kind of plan and sticking to it. Once the door of communication is open, it’s hard to close it. Don’t promise them the whole truth and then hide it from them. In our situation, honesty has been the best policy.
After living with Budd Chiari Syndrome and raising two kids, here is my advice on how to talk to kids about chronic illness…
Stick to the Basics
Explain it in simple terms and let them guide the rest of the conversation with any follow up questions. This will help avoid overloading them with too much information or unnecessary information that will only confuse them. You could also try breaking it up into shorter conversations.