Emily and Sara McIntyre say more support is needed for kids with chronic pain. Photo: Supplied.
Like a lot of teenage girls, Emily enjoyed baking, going to Girl Guides and spending time with her friends.
Things changed earlier this year, after the Queanbeyan 15-year-old injured her foot.
Mum Sara McIntyre said it started a “chaotic” time when the family searched for answers.
“As a parent, there was that initial [approach] of a ‘You’ll be right’ attitude. We’re doing physio,” she said.
“In the back of my mind, I knew something wasn’t right either, because she wasn’t improving through treatment and then things started to get worse. I thought, ‘That’s a bit odd’, because we’re doing all the right things …. but then we found out there was a reason.”
It took a flare-up for Emily to be diagnosed, after a doctor recognised her condition during a hospital visit.
She would ultimately be diagnosed with complex regional pain syndrome (a disorder that occurs after an injury and can cause things such as chronic pain and a loss of mobility).
“It was a bit confusing when we got scans done and there was nothing there … It was frustrating not having an answer to what was going on,” Emily said.
“I knew some people got chronic pain, but I didn’t know how they got it or anything like that [about] the different conditions.”
Over the past months, Emily has struggled with sleeping, ongoing pain, as well as having to pull back from school and her casual job.
“[School friends] have told me about upcoming assessments [or have] helped me out with a couple of assessments that I’ve missed,” she said.
“They’ve been there so I can have a hug when I need it.”
The diagnosis has also meant medical appointments, medications and long talks with doctors about what her future could look like.
Emilly isn’t alone – according to statistics from national peak body Chronic Pain Australia, one in five Australian kids experience chronic pain.
In the first national survey on Australian kids and families living with chronic pain, 877,000 children and young people from across Australia were asked about their experiences.
The survey found 82.7 per cent of kids with chronic pain missed school because of their pain, 85.1 per cent couldn’t participate in sport and 82.5 per cent had significant mental health impacts.
Girls and young women made up 57 per cent of youths living with chronic pain, with just over a third (36 per cent) being boys.
A 2025 report from the same peak body found that 74 per cent of adults with chronic pain felt ignored or dismissed, and nearly half (48 per cent) experienced prejudice from healthcare professionals.
Chronic Pain Australia chairperson Nicolette Ellis said the findings showed young people were left struggling.
“Too often, children’s pain is dismissed, even by health professionals, as anxiety, growing pains, or just normal. Families are left on long and expensive merry-go-rounds for answers and many children wait up to three years for a diagnosis,” she said.
“Chronic pain has been the leading cause of disability and lost productivity in Australia for decades, yet it is still not recognised as a condition in its own right.”
Ms Ellis is calling on the Federal Government to commit further resources.
“This lack of recognition means chronic pain is missing from policy, analysis and service planning and our children are paying the price,” she said.
“If the Federal Government is serious about boosting productivity, we need urgent recognition and investment in chronic pain diagnosis, management and treatment for children so that these families can get the care and support they so desperately need.”
It’s something echoed by Sara, who says more awareness and support are needed for families facing the challenge of chronic pain.
“It’s isolating – people don’t really understand what you’re going through.
“Pain’s invisible to other people. To look at Emily, she’s laughing and looks like her normal self – but on the inside, she’s in extreme pain all day, every day.”
Kids in Pain Week runs from 22 to 28 September.
If this story has raised any issues for you, you can call Lifeline’s 24-hour crisis support line on 13 11 14. In an emergency, call triple zero.
