How to Explain Your Chronic Illness to Your Children

By ​Brenda Kimble

Kids are smarter than we give them credit for. While they might still be their delightful, exhausting, rambunctious selves when you’re feeling your worst, they can always tell when something’s not quite right. And just like the rest of us, that can make them stress out and worry that the worst could possibly happen to someone they absolutely adore.

Stress isn’t healthy for anyone, whether you’re 5 or 85—and it’s not just your children who are piling it on. We’re also betting that wondering what to tell your kids about your symptoms and your bad days isn’t great for your mental health, either.

In fact, telling your children what’s up can help you teach them healthy communication skills along with empathy and compassion. There are many reasons to fill your littlest loved ones in on the basics of your chronic illness and what it means for you and your family. Here’s how to get it right.

Ask your healthcare team for suggestions

Whether you have recently received your diagnosis or you’ve only just begun to consider sharing it with your children, this is all new to you. For your doctors, though, dealing with your chronic illness has been their job for years. Your family will not be the first they’ve worked with, so they might have some good ideas about how to explain your illness to children.

Ask them if there are any kid-friendly resources they’re familiar with, and if they have any specific recommendations for your unique situation.

Discuss with your partner what you want to share with your children

Even though you’re the one with the chronic condition, your significant other should have equal say about what you tell your kids about it, along with when and how. Since they experience your illness secondhand, just like your kids do, they might have some good ideas about how to explain it in a way they’ll understand.

It’s also likely that your kids have already asked them some questions about how you’re feeling and what’s wrong with you. That insight will let you know where you should focus your explanation—and give you time to come up with answers that are as kid-friendly as possible.
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As you and your partner have this conversation, it might also be helpful to include other caregivers, like nannies and other family members. If they spend significant time with your children, they should know about the problems and changes your family is experiencing, especially since your kids might begin behaving differently.

Pick a time when you can give the conversation your full attention

It can be tempting to bury an important conversation in the middle of another activity. Resist that urge. Rather than talking to your tot while you’re driving the car or cooking dinner, sit down as a group and talk face-to-face.
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Also try to do it when you don’t have any pressing activities to get to, like school or soccer practice. You want your child to know that you have as much time as you need to talk and, if they’re upset afterward, you won’t risk sending them off distracted or in the middle of a meltdown.

Use aids to help kids understand

There are specialty books, dolls and stuffed animals made for kids with chronic illnesses. Depending on your chronic illness and your children’s comprehension level, it might be helpful to lean on these tools as you describe what your sickness is, how it affects your body and what you’re doing to treat it.

Prepare them for any upcoming changes in routine

Kids’ lives are built on routines and any change in them can upset the order—and send your tots into tantrums. If you expect that there will be schedule disruptions in the short- or long-term, talk out the possibilities with your kids now so that they know what’s coming. Talking it through helps children get used to the idea of it before it becomes a reality.

​Discuss their feelings and answer questions

One of many important parenting jobs is teaching children how to express their emotions in healthy ways. Your chronic illness—and this conversation in particular—offers another teaching moment for you and your loved ones. It’s normal for people to feel guilty, angry, frustrated, worried and sad about their family members getting sick.
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As your kids go on this journey with you, they’ll probably experience a whole range of different emotions. Use this conversation as the first of many about how to process these feelings.

Brainstorm ways they can help

Sometimes, your children will crave extra cuddles to soothe their fears about you and your chronic illness. Other times, they’ll want to do anything they can to help you feel better. Now is a wonderful moment to discuss everyday acts of kindness.

Together, come up with a list of small things your children can do to be helpful and to make you smile when you’re feeling poorly. No matter how young they are, if they can understand your condition, they can lend a hand. That could mean picking up their toys, folding laundry, vacuuming, making a sweet card or bringing you snacks or beverages.

Give them regular updates about your chronic illness

Once in the loop, always in the loop—at least where your immediate family is concerned. Some kids will wonder and worry until you share your news with them, while others will pepper you with questions every day. Handle both by letting them know regularly about your doctor’s appointments, your good days and your not-so-good days. Soon, your children will realize that you’ll share these updates when you have them, and they’ll feel comforted by that knowledge.

Consider seeing a counselor specializing in children and families

If your children are having trouble understanding or coming to terms with your chronic illness, try visiting a counselor that is experienced in working with families. While some behavioral changes or stress is normal, extremes are not. Set up an appointment if you’re worried or you’re having difficulties working through the problems yourself.

​We know that bringing your children into the fold when it comes to your health issues is a big deal. However, with this how-to guide, we’re sure you’ll make it through with flying colors. And who knows? Your tot might turn into the best nurse a sick grown-up could ask for.

Author Bio

Brenda Kimble is a writer and caregiver based in Austin, TX. In her spare time, she enjoys blogging and connecting with others in her field. Outside of work, Brenda loves doing yoga, completing new DIY projects around her home, as well as spending time with her husband and three children. ​