Chronic pain affects one in five young Australians. About 877,000 children are affected by various forms of this disease. Cooper Smylie and Dayna Mattchewson are both amazing youth ambassadors. Together, they candidly open up about their own experiences with Complex Regional Pain Syndrome (CRPS) and juvenile idiopathic arthritis, respectively. Even though both conditions have deep physical and emotional impacts that often remain invisible to their peers and adults, this lack of understanding can be painful.
In 2007, a young boy from New South Wales, named Smylie, developed CRPS after bruising his knee while playing tag at school. This devastating accident resulted in unrelenting “burning, searing pain” to his right foot that has ultimately transformed his life. At the tender age of three years old, Mattchewson was diagnosed with juvenile idiopathic arthritis. This autoimmune disorder has led to painful inflammation in her joints. Both young people emphasize the powerful need for more awareness, education, and understanding of chronic pain among kids.
Recent accounts expose a deeply concerning pattern. Close to 65% of young people experiencing chronic pain took more than three years to get diagnosed, with many never being diagnosed at all. The crisis intensifies as 71 percent of affected youth were told their pain was due to anxiety, while over half had it dismissed as “growing pains.”
The Impact of Chronic Pain
The negative impact of chronic pain on functional, physical and emotional development can impede a child’s ability to thrive academically and socially. As our children’s Health Challenges report explains, 83 percent of children in chronic pain have missed school due to their illness. ADVERTISEMENTS In addition, over 50% of these children are behind in their education. Smylie reflects on his early experiences with pain and support, stating, “They … at the start saw it as me just trying to get out of school.” Instead, he urges everyone—including artists—to acknowledge what they’re going through. If a child is in pain, we want to believe and listen to them.
Mattchewson further opens up about not being able to relate to her classmates or connect with her teachers. “They’d be like, ‘Why are you using the elevator? You don’t look like you have something wrong with you,’” she explains. This misunderstanding created an even deeper sense of isolation and frustration. Both youth ambassadors use their platforms to promote more awareness and empathy toward people who live with invisible illnesses.
According to Dr. Kelsi Dodds, an expert in pediatric chronic pain, there should be improved diagnostic protocols. “With invisible illnesses, it’s difficult for other people to accept and empathise … they simply can’t see it, so they don’t understand it,” she states. She goes on to share how the entire approach to treatment is usually about healing or managing day to day pain instead of healing. The expensive, trial and error approach to treatment may unnecessarily lengthen the pain for many young cancer patients.
Mental Health Challenges
The toll of chronic pain goes far beyond physical pain, with dramatic effects on mental health. Mattchewson does acknowledge that her physical condition has affected her mental health. “It really affected my mental health and [it was hard] just not being able to do what other people can do,” she shares. Indeed, Smylie agrees with these sentiments. They can appear to be handling things great on the outside, when in reality they’re fighting their own internal battle under the surface. “We’re always feeling it in some way or another. Yes, we’re good. But we’re still dealing with something,” she adds.
Both young advocates highlight the need to treat mental health as well as physical health. They want to reach people with chronic or invisible disabilities and make them feel less alone through these stories. Their aim, pure and simple, is to promote deeper understanding among lay people.
The Road Ahead
Smylie and Mattchewson are national youth ambassadors for their conditions. They serve as strong advocates and leaders, raising awareness and fighting for better resources and care for their peers living with chronic pain. Just like them, they tend to want to empower future generations. They work to ensure no one has to suffer in their silence. As a leader in this field, Dr. Dodds has been vocal about the necessity of a cultural shift in how society views chronic pain in children. “We don’t want Australian children to grow up and move throughout their life thinking that their pain is normal … and you have to just live with it,” she asserts.
Both Smylie and Mattchewson went on to, over time, discover the better support available, while still acknowledging that the battle is far from over. To this day, they fight for themselves and others who are experiencing what they have through the system. Their perseverance provides hope to countless others who continue to battle. As advocates fight chronic pain at all levels—from governments to policy-makers and stakeholders—awareness is key. Knowledge will certainly be important in delivering a better future for young Australians.
