Helping Your Child Live With Chronic Illness

When you have a child with a chronic illness, it affects your child’s and your family’s life every single day. Will your child wake up feeling good? Or feeling sick? Your child might feel like life isn’t fair when they aren’t well enough to do things their siblings or friends get to do. And keeping plans flexible can be hard on the whole family.

Learning that your child has a chronic illness is overwhelming. You just want to make your child feel better, and you don’t always have that power. So you try to learn everything you can to help them. Sometimes it’s just hard to wrap your head around all that comes with having a child who has a chronic illness.

You’re not alone. There are many other families who are also living with a child who has chronic illness. And this page has some of their ideas that we hope will help you.

Daily Living With a Child Who Has a Chronic Illness

It might be shocking at first to hear the word “chronic.” It’s a hard word to digest. It sounds like “lifelong” or “always.” When your child first gets a diagnosis with the word “chronic” attached to it, they might feel miserable. It might be hard to imagine a time when they will feel better or can manage their illness each day. Over time, you’ll probably find treatments that help. As your child adjusts to living with their illness or special health care needs, you all start to settle into a new normal.

But even as you adjust, you’ll always live with uncertainty. Your child might have weeks of healthy, problem-free days and then have a flare-up for no clear reason. Some days you have to change plans at the last minute with siblings and friends. Or you might spend the day at the hospital with one child and come home to another child who needs your attention. If looking at everything that’s going on feels too stressful, you can just take it one day at the time and just take care of what’s in front of you.

As a caretaker, it’s important to take the time to take care of yourself too. Our page Accepting, Grieving, and Adapting to Life has more about the emotions you might be feeling and what it looks like to adjust to your family’s situation. It might help to connect with other parents who are also living with the uncertainty of chronic illness. You can also get some ideas on how to help your other children on our siblings page.

And don’t be afraid to take a break when you need to. Our page on respite care has ideas on how to get help.

Also, don’t forget that you can ask for support from trusted friends and family. Finding someone to listen, spend time with your family, or help you take a break is priceless.

Helping Your Child Manage Their Health

Children with chronic illnesses will need to learn to manage their health care needs on their own at some point. It isn’t always easy to know when to let go. You might feel like a yo-yo, bouncing between a good day when your child wants to take care of things themselves and a bad day when they need your full care.

Teaching them to take charge is a process. You can help by giving them choices early on – as many as they can manage. For example, a 5 year old might get to choose to get a shot at night while they are asleep. And a 16 year old might be ready to make all the decisions about their health care and treatments.

Here are a few more ideas from parents to help your child take more control of their health care:

• At any age, let your child know how often to expect checkups. Maybe they can remind you to schedule the appointments—or even call to make their own appointments as they get older.
• Talk to them about their treatments. They can start to learn why they need a special diet or know what to expect when they’re getting an infusion.
• Encourage your child to talk to their doctor about how they’re feeling. Help them come up with questions before a visit.
• Teach your child how to ask for their prescription from the pharmacy. As they get old enough, you can stand to the side and let them do the talking.
• Help your child learn about their benefits and how their health plan or insurance works. When they are young, you can explain the basics; as they become teenagers, you can have them listen in if you call the insurance company.

Our page helping your child build their independence has even more tips.

Chronic Illness and Your Child’s Medical Team

It’s very important for your child to have a team of doctors and nurses that you both trust. Your child will be spending a lot of time with them. You both might have to make some hard choices about treatments. There are some medical treatments that make your child’s life better today but could affect their health in the long term. You and your child have every right to get a second opinion. It’s important to know when to trust your gut and when to listen to the doctor.

We have other pages with information on finding and working with your child’s medical team.

• Receiving a Diagnosis for Your Child
• How to Talk To Your Child’s Doctor
• What is a Patient-Centered Medical Home for Children?
• Organizing Medical Records: Creating a Care Notebook

Your Child’s School and Friends

Having a chronic illness impacts different areas of your child’s life – not just their health. Maybe they have to miss a lot of school because of their appointments. Or, if they aren’t feeling well enough, it’s hard to join a sports team or go to after-school activities like their peers. There are ways to support your child and let them have as much social time and school success as possible. Here are a few:

• Find after-school activities that work for your child.
• Summer camps are places to connect with other children. You can look at the American Camp Association to find camps that are designed for (or can support) your child’s chronic illness. You can also search online for camps near you.
• Our article on helping your child create social circles.
• Our article on finding recreational activities that work for your child.
• See our page on Section 504 to learn how to work with your child’s school so your child can get the accommodations and extra help they need to be successful.
• Connect with other parents who have children with the same chronic illness or special health care needs as your child. Your child might be able to meet new friends and find support for your whole family.

Invisible Disabilities

Many chronic illnesses are invisible, which means people can’t see them so they don’t understand why your child needs special food or an accessible parking spot. Other people might give their opinions even if you don’t ask for them. Well-meaning friends and family members might have their own ideas about the best treatments for your child. When you’re just trying to cope with daily life and make the best choices for your child, it hurts to have others questioning your family’s decisions. Remember that most of the time these people just don’t understand what you’re going through. You and your child can decide how much to say about your situation and how much to listen to others. Our video and page on invisible disabilities have information and stories that might help you.

Sometimes, other children might tease or bully your child because they are different. See our page on bullying for ideas on how you can help your child.

Learning that your child has a chronic illness might be a shock. But it will get easier over time as you and your child learn more and grow into this new part of your life.