When Andrea Rowe was diagnosed six years ago with rheumatoid arthritis, as a mother she yearned for a way in which her children could understand her chronic disease. The Mornington Peninsula-based writer decided to create her own children’s book because she struggled to find a storybook describing her condition.
Andrea believes strongly that sharing stories about living with RA goes a long way in fighting misunderstandings and of course making sure that people suffering from RA never feel embarrassed about their condition. Determined to put an identity behind RA, it comes as no surprise that Andrea put herself forward to raise awareness of rheumatoid arthritis in the lead-up to National Pain Week in July. This comes as a new treatment, Rinvoq, has been made available on the Pharmaceutical Benefits Scheme for patients with severe active rheumatoid arthritis.
The move to create a children’s book to explain the invisible nature of her illness to her children was a smooth transition, because Andrea works as a copywriter and author. Reading children’s books to her children was always a way that Andrea helped her kids understand issues in the world. Now 50 and a mum of teenagers, she was first diagnosed six years ago. It was then that Andrea wrote the book to explain to her then primary school-aged children why some days Mum would look different. Josie’s Creaky Joints follows Josie as she learns to live with her condition and how to adjust
“For me writing it, I was also explaining it to myself,” said Andrea. “I had ownership on how I was explaining it to my kids and to others. It was a healing activity and it helped me articulate how I was feeling all the while explaining chronic illness in an easy-to-understand manner. At bedtime, we’d read the book and have a chat. We’d focus on the fact that RA was real; even if you couldn’t see it, it is real. It was difficult as often I didn’t have physical signs.”
It’s a valuable resource that Andrea has lent to others in her situation. It’s her hope that Josie’s Creaky Joints will find a publisher soon so that others around the world can have a child-friendly manner in which to explain a complex ailment or disease. The support groups that Andrea discovered on the Peninsula were also a fantastic support in connecting her to others living with RA and she’s forever grateful that she was diagnosed at a time of modern medicine so she can work on preventing her joints going into further disrepair.
“There are times where I can’t do things like tie a ponytail or put petrol in the car. When they were younger I would describe the flare-ups to my kids as like having lobster claws: hot, inflamed, and difficulty with my fine motor skills. No one who has RA looks the same. I used to think I could be the person who cured their RA. But with treatment and medication, I’m more realistic and hopeful for an active life with RA in it.”
Andrea’s thrilled to announce her next children’s picture book will be published by Little Hare this summer. Jetty Jumping will explore the unique nature of the Peninsula and coastal living, and focuses on the joys found both above and below the jetties. It’s a nostalgic reminder of how special coastal summers are, and conquering our fears to explore what lives below the surface.