Arthritis is often considered to be a condition that is
acquired with age. However, Arthritis can be diagnosed in children as young as
four, resulting in them experiencing chronic pain and limited joint function on
a daily basis. An invisible condition, it is often difficult not only for these
young children to comprehend, but also for family, friends and teachers to
understand.
Two years ago, Arthritis Victoria received some funding to assist them in producing a quality publication for children with Juvenile Idiopathic Arthritis (JIA). The project team from Arthritis Victoria were excited by the success of my children’s books aimed at helping at helping young children with anxiety, and approached me to see if I would be interested in creating a similar type of children’s book for their organisation.
Every year Arthritis Victoria runs ‘Camp Limber Up’ for families and children who live with arthritis. This is an opportune time for families to connect with others dealing with similar issues and creating a support network. In 2013, I attended this camp, running a workshop teaching the children ways to manage anxiety, from my book Go Away, Mr Worrythoughts!
Two years ago, Arthritis Victoria received some funding to assist them in producing a quality publication for children with Juvenile Idiopathic Arthritis (JIA). The project team from Arthritis Victoria were excited by the success of my children’s books aimed at helping at helping young children with anxiety, and approached me to see if I would be interested in creating a similar type of children’s book for their organisation.
Every year Arthritis Victoria runs ‘Camp Limber Up’ for families and children who live with arthritis. This is an opportune time for families to connect with others dealing with similar issues and creating a support network. In 2013, I attended this camp, running a workshop teaching the children ways to manage anxiety, from my book Go Away, Mr Worrythoughts!
During this time, I was able to speak to individual children about their experiences living with JIA. I gained valuable information about what it is like for the whole family, the type of chronic pain that JIA causes and the variety of treatments that are used to both assist the pain and prevent further joint flares, as well as the myriad of side effects that the children also have to manage.
With this insight, knowledge and ground level understanding,
I was able to create a story that not only addressed the physical pain, but
also the emotional impact JIA has on these children. I scribbled many notes,
key words and language used by the children, as well as specific examples that
would eventually become part of the final story.
Statistically there are more girls than boys affected, so it
was fitting that the main character be a young girl called Bella. Like many children
with JIA, Bella doesn’t always suffer joint flares and on her good days, she is
just like everyone else – able to do anything. Joint flares can hit very
quickly and without warning, so on the day of Bella’s birthday party, she is
devastated when she wakes with swollen and sore arms and legs forcing her to
miss out on the fun activities planned.
Through my discussions with both parents and children, a
common underlying issue can be resilience and the ability to ‘keep on going’
despite having no control over when joint flares occur. Often these brave
children endure pain silently so as not to miss out on the daily activities
most kids don’t even think about. I felt I needed to address this in the story as
well as the physical pain limitations.
The Worst Pain in the World was launched by Arthritis Victoria in October 2014 at their annual Camp Limber Up. It provided the perfect audience to present the book to, and as I sat down to read to the children who live with juvenile arthritis on a daily basis, I paused. They were my toughest audience and this was the moment of truth. Had I really understood their plight? Did I listen enough to their experiences? Was I able to weave their stories into this children’s book through my words and emotive illustrations?
The Worst Pain in the World was launched by Arthritis Victoria in October 2014 at their annual Camp Limber Up. It provided the perfect audience to present the book to, and as I sat down to read to the children who live with juvenile arthritis on a daily basis, I paused. They were my toughest audience and this was the moment of truth. Had I really understood their plight? Did I listen enough to their experiences? Was I able to weave their stories into this children’s book through my words and emotive illustrations?
As I turned the pages I received my feedback. Nods of
agreement, laughs from parents and giggles from the children. These families
now had a voice and a story to share with their friends, family, teachers and
doctors to help them understand the complexities of juvenile arthritis.
Seeing these brave and resilient children hug their signed books
was overwhelming, and highlighted the importance of my work as a children’s
book author and illustrator. I am very proud of my involvement in this project with
Arthritis Victoria and the children’s book that is called The Worst Pain in the World.
Nicky Johnston is an Australian author and illustrator with a passionate interest in supporting children's mental health. Her picture books include Go Away, Mr Worrythoughts!, Happy Thoughts are Everywhere... (KBR review), Actually, I Can (KBR review) and the recently published The Worst Pain in the World. Visit Nicky's website and Facebook page to find out more about her books and gorgeous artworks.
