Cooper Smylie hit his knee while playing tag at school.<\/p>\n
He was nine at the time and did not think much of it.<\/p>\n
“A few days later, I just woke up in screaming pain,” says Cooper, who is now 15.<\/p>\n
For the next six months, he and his family bounced between emergency rooms and GP clinics trying to find out what was causing the constant “burning, searing pain” in his right foot.<\/p>\n
“I just thought that one day I would wake up and get better, but nah, [the pain] never went away,” he says.<\/p>\n
Loading…One in five Australian children affected<\/p>\n
If something hurts for more than three months or for longer than it should take to heal, that pain is chronic.<\/p>\n
It affects about 877,000 young people in Australia, roughly one in five children, according to a recent report from Chronic Pain Australia.<\/p>\n
The report, which surveyed 229 young people with chronic pain, and their families, found it could affect pretty much every part of a child’s life, including their mental health, social life, education and sleep.<\/p>\n
“It’s a very individual experience,” says Kelsi Dodds, a neurophysiologist at the University of Adelaide.<\/p>\n
<\/p>\n
Kelsi Dodds says chronic pain can range from mild to severe. (Supplied)<\/p>\n
Dr Dodds says the impact of chronic pain varies from relatively mild, “kind of dull, sort of achey pain” to a “much more severe pain”, which makes performing daily tasks like having a shower difficult.<\/p>\n
With no diagnosis and no way to manage it, Cooper could not walk. And he believes staff did not take him seriously.<\/p>\n
“They \u2026 at the start saw it as me just trying to get out of school,” he says.<\/p>\n
“I just didn’t feel heard.”<\/p>\n
The report found 71 per cent of young people were told the pain was due to anxiety, and more than half had it dismissed as “growing pains”.<\/p>\n
“There is this general assumption, particularly in young people, that their pain is being made up because they want to get something or they don’t want to do something \u2026 or it’s part of growing up,” Dr Dodds says.<\/p>\n
When Cooper’s pain started, he was living on the Gold Coast near a lot of theme parks.<\/p>\n
“I couldn’t go on roller-coasters or anything, just due to the vibrations, like all these little things that you wouldn’t think hurt just really hurt,” he says.<\/p>\n
“Seeing all my friends around when I was still in school [and they were] playing and being able to be a kid \u2026 it was quite hard mentally just to live, really.”<\/p>\n
<\/p>\n
Cooper Smylie before his diagnosis. (Supplied)<\/p>\n
After half a year, he got a diagnosis: Complex Regional Pain Syndrome (CRPS), a rare condition that can happen after an injury or surgery.<\/p>\n
“I was lucky. I got it quick, but with a lot of people, if it isn’t treated, it just gets worse,” says Cooper, a youth ambassador for Chronic Pain Australia.<\/p>\n
After two years, he also found out he had a related nerve condition called allodynia.<\/p>\n
“Any touch, air movement, anything around my foot, which is where I have CRPS, it just causes extreme pain,” he says.<\/p>\n
Almost two-thirds of affected young people surveyed waited three or more years for a diagnosis, or never got one at all.<\/p>\n
Dr Dodds says diagnosis often takes a trial-and-error approach across many health disciplines, rather than “simply going to the GP and getting a one, quick fix”.<\/p>\n
Invisible illnesses<\/p>\n
While knowing what is causing pain can help with treating it, that does not mean it will go away.<\/p>\n
For Dayna Mattchewson, from Adelaide, there is no cure for her condition.<\/p>\n
“I can only slow it down,” she says.<\/p>\n
<\/p>\n
Dayna Mattchewson was diagnosed with juvenile idiopathic arthritis when she was three. (BTN High: Joseph Baronio)<\/p>\n
When Dayna was three years old, she was diagnosed with juvenile idiopathic arthritis, an autoimmune disorder which leads to inflammation.<\/p>\n
“I may have arthritis, but I am not old,” says Dayna, who is now 20.<\/p>\n
When she was still in school, she missed a lot of it.<\/p>\n
<\/p>\n
Dayna Mattchewson says her condition took a toll on her mental health. (Supplied)<\/p>\n
And when Dayna could make it, she says her peers and teachers did not always understand the adjustments she needed.<\/p>\n
“They’d be like, ‘Why are you using the elevator? You don’t look like you have something wrong with you,'” she says.<\/p>\n
“With invisible illnesses, it’s difficult for other people to accept and empathise \u2026 they simply can’t see it, so they don’t understand it,” Dr Dodds says.<\/p>\n
“It really affected my mental health and [it was hard] just not being able to do what other people can do,” Dayna says.<\/p>\n
Eighty-three per cent of children in chronic pain missed school due to their pain, and more than half fell behind academically, according to the survey.<\/p>\n
<\/p>\n
Dayna Mattchewson in hospital. (Supplied)<\/p>\n
Living with pain<\/p>\n
Cooper Smylie (centre) paces himself to manage his pain. (Supplied)<\/p>\n
Cooper says he has much better support now than he had at the start.<\/p>\n
“We had one point where a doctor pulled up Google in front of us and googled CRPS, which was not a great sign,” he jokes.<\/p>\n
Dr Dodds says treatment for chronic pain is often more about managing the pain day to day, rather than completely stopping it.<\/p>\n
For Cooper, this means pacing himself and planning how to best use the energy he has.<\/p>\n
He pours much of that energy into making fishing videos.<\/p>\n
<\/p>\n
Cooper Smylie enjoys making fishing videos. (Supplied: Fysh Lur)<\/p>\n
“It’s a real good distraction from the pain and is quite calming,” he says.<\/p>\n
Dayna adjusts her plans when she has flare-ups and has a biologic injection each week to reduce inflammation.<\/p>\n
She also wrote a song about her pain, which she hopes helps other young people.<\/p>\n
“Even if they don’t have the same condition but suffer with an invisible disability, I hope it helps them,” she says.<\/p>\n
Fighting to be heard<\/p>\n
Dayna Mattchewson at Government House in Canberra. (Supplied)<\/p>\n
Dr Dodds says it is crucial that kids get the care they need, so feelings of isolation do not snowball as they get older.<\/p>\n
“We don’t want Australian children to grow up and move throughout their life, thinking that their pain is normal \u2026 and you have to just live with it,” Dr Dodds says.<\/p>\n
“Everyone in the medical and scientific space \u2026 they want to help,” she says.<\/p>\n
Both Cooper and Dayna want to see more understanding of their conditions and better support for all young people in pain.<\/p>\n
<\/p>\n
Dayna Mattchewson is pursuing an acting career. (Supplied)<\/p>\n