Books for Children, Teens, and Parents
There are some amazing books out there to provide us with either a feeling of support or tangible advice to improve our health outcomes.
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For Children with Chronically Ill Parents
Roxy the Raccoon: A Story to Help Children Learn about Disability and Inclusion
A raccoon and her friends make the forest inclusive for everyone. Ages 4-8
Big Tree is Sick: A Story to Help Children Cope with the Serious Illness of a Loved One
This book talks about a sick tree to teach children about serious illness.
How Many Marbles Do YOU Have?: Helping Children Understand The limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia
This story essentially explains the "spoon theory" to children by using marbles.
My Mom Has Gastroparesis
This book breaks down gastroparesis into simple terms for children to understand.
Some Days: A Tale of Love, Ice Cream, and My Mom's Chronic Illness
This is a story to share with children about living with a chronic illness that changes day by day. The author has MS.
Ravyn's Doll: How To Explain Fibromyalgia To Your Child
This book helps children understand what an invisible chronic illness is, and how to explain it to others.
When Mommy Is Sick
When Mommy is in the hospital, as she is frequently sick, her child misses her a lot.
The Invisible String
Coping with loss and grief for children.
Mommy's Going to the Hospital
This book helps children understand a parent going to the hospital for chronic health issues.
For Children with Chronic Illness
Roxy the Raccoon: A Story to Help Children Learn about Disability and Inclusion
A raccoon and her friends make the forest inclusive for everyone. Ages 4-8
Big Tree is Sick: A Story to Help Children Cope with the Serious Illness of a Loved One
This book talks about a sick tree to teach children about serious illness.
Imagine a Rainbow: A Child's Guide for Soothing Pain
This book walks children through soothing their physical and emotional pain.
My Bendy Body: Living with hypermobility
A book to help children learn to understand their hypermobility and/or EDS.
Be The Boss Of Your Pain
This book helps children overcome their physical and emotional pain.
Special Like Me: Ehlers-Danlos Syndrome
This book is a tool to help parents and caregivers explain EDS to children
For Children with Chronically Ill Siblings
Roxy the Raccoon: A Story to Help Children Learn about Disability and Inclusion
A raccoon and her friends make the forest inclusive for everyone. Ages 4-8
Big Tree is Sick: A Story to Help Children Cope with the Serious Illness of a Loved One
This book talks about a sick tree to teach children about serious illness.
I Wish I Was Sick, Too!
One sibling is sick and the other isn't. The "well" child wishes to be sick to get out of chores, school, etc.
Views From Our Shoes
Is full of stories from siblings of children with disabilities and health conditions.
Special Brothers and Sisters: Stories and Tips for Siblings of Children with a Disability or Serious Illness
A collection from the brothers and sisters of children with special needs, disabilities, or serious illness.
Everybody is Different: A book for young people who have brothers or sisters with autism
Intends to answer the many questions of brothers and sisters of young people on the autistic spectrum.
For Adolescents and Teens with Chronic Illness
The Disability Experience: Working Toward Belonging
Talks about disability and limitations that are set due to social structures. It educates teens on how to break through these inequalities.
I Still Dream Big: Stories of Teens Living with Chronic Illness
This book includes a compilation of stories from teens that are chronically ill, with various conditions.
Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A story of one tween's diagnosis of Ehlers-Danlos Syndrome / joint hypermobility
Children's book to explain the story of EDS in a young adolescent. Written by EDS specialist Brad Tinkle.
Parents with Chronic Illness
When a Parent Is Sick: Helping Parents Explain Serious Illness to Children: Helping Parents Explain Serious Illness to Children
This book helps you navigate explaining your chronic or serious illness to your children.
Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms
The author educates chronically ill parents through insight, humour, and hope. The author herself struggles with PoTS, Chronic Fatigue Syndrome, Fibromyalgia, Lyme, Multiple Chemical Sensitivity, and more.
Parents of Chronically Ill Children
When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey
This book was written by mental health professionals to help guide parents through parenthood with a chronically ill child and the related emotions.
POTS and Other Acquired Dysautonomia in Children and Adolescents: Diagnosis, Interventions, and Multi-disciplinary Management
For patients, physicians and parents. Is a scientific review of the diagnosis, treatment, and management of PoTS.
Chronic Illness in Children and Adolescents (Advances in Psychotherapy; Evidence-Based Practice)
This book details different types of therapies to help guide children psychosocially through their chronic illness.
Chronic Hope: Raising a Child with Chronic Illness with Grace, Courage, and Love
This avoids the typical tone of a "self-help" book, and guides parents through the emotional stresses involved with raising a chronically ill child. It details the authors mistakes and revelations in her own journey as a caregiver.
Extreme Parenting: Parenting Your Child with a Chronic Illness
"The book provides an in-depth understanding of the path through chronic illness, illustrating the obvious effects on the child, but also the parents, siblings and the family as a whole across the spectrum from the psychological and social to the physical."
When Someone You Love Has a Chronic Illness: Hope and Help for Those Providing Support
This book is not specific to parent child relationships, and provides accessible explanations for complex behaviours and feelings associated to loving someone who is chronically ill.