How to Talk to Kids About Chronic Illness

Kimberly Munoz

Published on March 1, 2021

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.

Be Mindful of Energy

I knew ahead of time that I needed to be strong when having these conversations. If I came off as scared or sad, that would pass onto them.

You’ll want to stay calm and offer an even tone of voice. Look them in the eyes. Panic creates panic, which will only do harm. You don’t have to pretend like it’s not serious, but it’s important to portray a sense of strength for them to avoid instilling too much fear in them.

Celebrate the Positives

It’s easy to only see the bad when it feels like life is falling apart. But being able to turn that around and find some positives is important for family morale. When I have good lab work or feel good, I make sure I let them know. Remember that they are always watching. We tend to share our downs more than the ups, but it’s important to let our kids see those uplifting moments and join in on the celebration. It will ease their fears.

The other day, my son was talking about push ups and so I told him I would try to do one not on my knees. When I got up the smile across his face was blinding! “ MOM! You just did a real push up. I’m really proud of you right now!” Celebrate even the smallest things. One regular push up might not be a big deal to many but he has seen me on days I can’t even get out of bed. And now he has seen me work hard to live healthier and knows I am getting stronger because of it.

It’s Not About You

I distinctly remember a day when I wasn’t feeling well and my son came into the room to check on me. He asked me if I was sad. I was in a lot of pain and feeling awful, and yes, even a little sad. Instead of dumping all of that on him, I pulled him in for a hug and said, “How can I be sad, when I am here with you?”

It was true. That moment wasn’t about me. It was clear that he was having some of his own feelings about me being sick and needed a little comfort and reassurance. I didn’t lie. I am beyond thankful for every day I get to be home with them. If it was my older son I would have explained that I was just hurting more than usual. If I said I was fine, he would have pushed for the truth, so I gave it first.

Bring Them To An Appointment

When my children were young, they came to a lot of appointments with me. Sometimes they were quiet and didn’t say much. Most of the time they just played on my phone. But there were times when they did ask questions. I’m thankful that my doctors have all been willing to answer them and explain things to them in the simplest of terms.

Now that they are older, they know the drill and have the option to stay home if they’d like. But they still have questions every now and then. I think they find comfort in being involved and kept in the loop which brings me comfort too.

Share What You’re Comfortable Sharing

You can explain the big and scary parts and make them not so big and scary. You can show them that it’s ok to have all the feelings, but that when you’re ready, to get back up again and keep moving forward.

Living a life with chronic illness is full of learning opportunities not just for you, but for them too. Try as you might, kids see a lot more than we give them credit for. Hiding things from them will only wear your down. Find a way to talk to your kids about your illness, because while you are the one living with the diagnosis, they are right there living life with you.

Kimberly Munoz

Kim is a 37-year-old wife and mother of two boys. She was born and raised in the South Pacific and is now living in Texas. In 2008 she was diagnosed with Budd Chiari Syndrome, a rare liver disease. When she couldn’t find anyone else living with the same condition, she started her blog Hope Whispers to share her journey and give hope to others living with chronic illness.