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There are so many feelings involved with a chronic illness such as confusion, anger, guilt, and being a burden. It may sound like these are the feelings of someone living with a chronic illness, but really those can be the feelings of the children with a parent or loved one living with chronic illness.
We may not realize it, but our kids can carry big feelings about our condition, and they usually don’t know how to process these feelings or how to talk to us about it. And if it’s not unusual for kids to have a tendency to feel at fault for their parents’ divorce or other living situation, then it’s not unusual that it applies to our health as well.
If a child doesn’t understand the why of their parent’s failed health, physical limitations, or reason for being bed-bound, they may not feel comfortable asking the why of it. This leaves them to draw their own conclusions, which tend to come in the form of blaming themselves. Hence the feelings that stem from it – anger, guilt, and being a burden. This may not apply to all children, of course, but for a vast majority, it does.
So, how do we help them with these feelings? How do we start the conversation about our health, condition, and all that is involved in living with a chronic illness?
My friend and fellow advocate, Melissa Swanson, wrote a children’s book called Ravyn’s Doll about explaining fibromyalgia to a child. Shortly after publication, she sent me a copy and asked my feedback on it. Immediately I loved the vibrant colors and illustrations of the characters and settings. The storyline was simplistic and explained fibromyalgia from a kindergartner’s perspective.
At the point when I received the book, I had already explained my condition to my kids years prior. It was still difficult to relay such a complex illness to them, but I did it the best I knew how (more tips about this on the Being Fibro Mom blog). They got a general idea of it, but I could see they were confused by it all. I didn’t look sick, so how could I be sick?
When I read Ravyn’s Doll to my kids, it opened a new discussion about my limitations and symptoms where they were able to express their concerns and ask questions about it. They asked if I felt like Ravyn’s mom in the story, and if they could help me the way Ravyn helped her mom. It was helpful to have a reference point and for my kids to have something they could relate to and understand.
This spark of understanding can go a long way in processing the feelings kids have when their parents are dealing with one or more health conditions. It can free them of feeling responsible for their parents’ health and feel more included in helping. Kids want to help and feel as though they matter, especially when it comes to their family.
When I did more research into other children’s books about chronic illness, I found many books on the subject. Little Parachutes is an online resource with hundreds of children’s books dealing with all the feelings of various topics such as disabilities, behavioral issues, mental health, and more. The books are written for children dealing with certain issues and also for children with parents dealing with various issues.
Here are nine children’s books I found that kids of chronically ill parents should read. They are listed in no particular order.
(1) Ravyn’s Doll: How to Explain Fibromyalgia to Your Child
Written by Melissa Swanson / Illustrated by Ana Aleksanyan
Ravyn is a kindergartner and her class is asked to make a paper doll of someone they know is sick or hurt. The doll Ravyn creates is one of her mom, but her doll doesn’t look hurt or sick. She uses the doll to explain to her class about fibromyalgia and how someone can be sick but not look sick. Ravyn explains how her mom is constantly tired, unable to play with her some of the time, and is sensitive to lights and sounds. She also explains how she is able to help her mom during those times she isn’t feeling well.
(2) Why Are You So Sad?
Written by Beth Andrews / Illustrated by Nicole Wong
This book is about having a parent living with depression. It explains the feelings of depression and how depression can sometimes be seen (not being able to sleep or eat). The author assures kids that depression is not their fault and that they are still loved, even though their parent is experiencing sadness and feelings of loneliness. There are ways children can help during these times and the author explains how their parents can also get help from their doctors. The book also deals with how to manage feelings of worry, fear, anger, and sadness.
(3) When Pete’s Dad Got Sick: A Book About Chronic Illness (Helping Kids Heal)
Written by Kathleen Long Bostrom / Illustrated by Cheri Bladholm
Pete’s dad is no longer able to play with him as he used to, and Pete is angry about it. His dad tries to explain why he can no longer play with him, but Pete is unable to understand. This results in him feeling hurt and having other mixed feelings. This book is part of the Helping Kids Heal series from Zonderkiz and gives suggestions to parents to help their children process these feelings associated with chronic illness.
(4) How Many Marbles Do YOU Have? Helping Children Understand the Limitations of Those with Chronic Fatigue Syndrome and Fibromyalgia
Written by Melinda Malott
Melinda uses a jar-and-marble analogy to explain the limitations of chronic fatigue syndrome and fibromyalgia. The more energy used throughout the day, the fewer marbles there are in the jar. It’s easy for children to understand this concept, and the book teaches how to best use the marbles you have. In addition to explaining the limitations through the marble jar, the author gives suggestions on how to preserve your marbles through rests, alternate ways to complete tasks, and more. As a nurse and health educator, Melinda uses her personal experience of these conditions to create a children’s book in an effort for parents and children to understand the condition together.
(5) Tiger Livy
Written by Erin Garcia and Besty Miller / Illustrated by Ivreese Tong
This children’s book is a bit different than the others listed, but is included in this must-read list because it deals with chronic illness. The main character, Livy, has been diagnosed with Juvenile Dermatomyositis (JDM or JM) and the diagnosis affects the once active girl in physical and emotional ways. Because of JM, Livy is no longer able to play as before because the illness attacks her immune system, leaving her fatigued most of the time. The medications she has to take have side effects causing additional issues. Her Grandpa sees her struggling and compares her to a tiger (strong and able to fight to survive) in order to help her cope with her condition.
(6) Mommy Has to Stay in Bed
Written by Annette Rivlin-Gutman / Illustrated by Bonnie Lemaire and Shannon Stamey
Annette is a former teacher, award-winning producer, and writer with a background in educational and children’s programming. During her second pregnancy, she was put on bed rest and her experiences during that time inspired her to write Mommy Has to Stay in Bed. This short and entertaining read is all about combating the frustrations and boredom that comes with bed rest for both parent and child.
(7) Mommy’s Going to the Hospital
Written by Josie Leon / Illustrated by Elizabeth Parkes
Living with a chronic illness is oftentimes accompanied by surgeries and/or hospital stays. This can present many challenges and mixed feelings for our children. In this children’s book, Josie tackles those issues by using easy to understand language and colorful illustrations. She helps children understand these visits and help both parent(s) and child(ren) to tackle the emotions associated with it. It will also help with planning the stay and working through the healing process.
(8) When Mommy is Sick
Written by Ferne Sherkin-Langer / Illustrated by Kay Life
In this beautiful watercolor illustrated children’s book, a little girl is experiencing a multitude of feelings when her mother is frequently hospitalized due to her chronic illness. Her father helps his daughter by counting down the days until her mother returns and comforting her through her sadness. While the specific illness is not listed, the feelings children experience during these stays are addressed with compassion and gentleness. As with Mommy’s Going to the Hospital, this is a perfect read for those that are frequently hospitalized.
(9) Worried (Dealing with Feeling…)
Written by Isabel Thomas / Illustrated by Clare Elsom
Our children get worried about us when we aren’t able to do the things we used to be able to do with them. They worry if we will get better, about our frequent hospital visits, and the uncertainty of not knowing. Even if we talk to them about our condition and reassure them, it’s natural for our kids to still worry. This picture book addresses the feelings of the worry associated with illness, bullying, and other issues. It walks them through these feelings and how to process them with a ‘worry toolbox’.
