It’s been called the “silent epidemic” as one in five children experiences chronic pain, harming their ability to thrive as young people and costing carers greatly.
Chronic Pain Australia’s inaugural Kids in Pain Report was released to mark Kids in Pain Week (22 to 28 September), highlighting that 877,000 children and young people nationally live in pain every day.
Eight-year-old Eva from Lilydale was a miracle baby, naturally conceived after her mother, Anne Knezek, had a long IVF journey that was unsuccessful.
The joy of welcoming their beautiful baby girl into the world was met with challenges almost instantly.
“My daughter was born with congenital hypothyroidism, which meant countless tests and hospital visits,” Anne said.
“Within the first week, we noticed her legs turning bright purple. Nurses dismissed my worries, saying I must be holding her wrong or strapping her in her car seat too tightly. But I knew in my gut something wasn’t right.
“Eventually, during yet another hospital visit, we discovered she had a heart murmur, pulmonary stenosis, a narrowing of the main heart valve. I was devastated and shocked, wondering what this would mean for her. It had taken so long to be heard.”
Testing became more frequent, and Anne said the feeling of just having to “push through” became second nature, especially to override feelings of guilt for both her and her husband.
As Eva struggled to latch during breastfeeding, they were advised to switch to bottles, but this too proved challenging. Anne said it felt like her concerns were being brushed off.
“Doctors called her ‘a lazy baby’ and told me she’d feed when she was ready. Meanwhile, she was losing weight rapidly,” she said.
“Eventually, she was labelled ‘failure to thrive’.”
Unable to hold her head up on her own at three months old, and then going on to experience severe constipation and bleeding during toileting, more signs and symptoms were presenting.
It wasn’t until Anne and her husband engaged a private paediatrician that Eva was correctly diagnosed with Ehlers-Danlos Syndrome (EDS).
The puzzle pieces all fell into place, with Eva having all the symptoms of EDS, including failure to thrive, gut problems, low muscle tone, extreme hypermobility, high palate and feeding difficulties, heart issues and severe pain after activity and being in the cold.
“It finally made sense—not only for her, but for my own mother’s history of joint problems, surgical complications, and miscarriages. We finally had an answer for my daughter and how it has impacted my family,” Anne said.
“I also have vasovagal syncope, a blood pressure condition linked to Ehlers-Danlos Syndrome, and my eldest has an autism diagnosis—further proof of its genetic roots in our family.”
Eva faces challenges every day, like turning taps, keeping her balance while sitting on the toilet or at the dinner table, fastening her seat belt, fatiguing when writing, keeping up with friends during play, and enduring pain at night and after sports activities.
“She still faced so many challenges with such courage,” Anne said.
“It’s hard when I hear people say, ‘It must just be growing pains,’ not realising the struggles she faces with this hidden disability.
“Therapy is essential for her, yet to outsiders she ‘looks fine’.
“Awareness and understanding are crucial, and children like my daughter, with Ehlers-Danlos Syndrome, need to be heard and not dismissed or endlessly poked and prodded in the hospital.”
Chronic Pain Australia chairperson Nicolette Ellis said the experience of parents and their children being brushed off is all too common.
“Too often, children’s pain is dismissed, even by health professionals, as anxiety, growing pains, or just normal,” she said.
“Families are left on long and expensive merry-go-rounds for answers, and many children wait up to three years for a diagnosis.”
The emotional, mental and financial strain on the family has also been immense.
Anne, a qualified teacher, had to give up her full-time position when her workplace would not allow her to drop down to part-time.
This is not an uncommon reality, with the Kids in Pain report finding that one in five carers (19 per cent) have had to resign from work, while a further 28 per cent reduced work hours and 30 per cent took unpaid leave.
The report noted it disproportionately affects women, who are most likely to be the primary carer for a child with chronic pain.
For Anne, Eva and their family, it’s been an expensive process to get Eva the support and care she needs, including custom-made orthotics.
Having been approved for NDIS just before Eva was due to start kindergarten, this only lasted until Eva turned seven, with their funding then being cut.
Since then, Anne said the “battle with NDIS has been exhausting, particularly as our applications have repeatedly been rejected”.
With support from advocates, Anne said it was only in recent weeks that Eva was reapproved for NDIS.
“My daughter needs ongoing NDIS support to maintain her body so she can function in everyday activities to live the full life she deserves,” Anne said.
“My daughter’s pain isn’t like a simple headache; it can leave her on the floor unable to walk, too fatigued to ride a bike or concentrate at school after nights spent awake in pain.”
Eva, like the many thousands of children who experience a form of chronic pain, misses out on having regular experiences and enjoying the fun of school and childhood.
“School is a place of learning, friendship, and growth. For my daughter, it has also been a place where she longs to belong — to do everything her friends are doing. Yet, as she has grown, that has sometimes become more complicated,” Anne said.
“My daughter lives with many worries and anxieties, especially around standing out or being seen as different.
“She worries about being left behind when she can’t keep up, she worries about the looks she might get if she is excluded from games that she physically can’t manage, and she also worries about the pain she’ll face later if she tries to push through activities like running, gymnastics games, or tag.”
Eva also carries fear around being dismissed and not being heard when having to tell someone new that she is in pain at school. There have also been struggles in getting approval for Eva to access heat packs and pain relief at school so she can participate fully.
“My daughter’s story is a reminder that true inclusion isn’t only about policies or playground games. It’s about listening, believing, and making space for every child’s experience so that the fear of not belonging can be removed.”
Chronic Pain Australia’s report shows the cruel reality of chronic pain in childhood.
Sleep struggles impact 84 per cent of children, 85 per cent are unable to participate in sport, and 83 per cent experience significant mental health impacts.
Their schooling is highly disrupted, with 83 per cent having to miss school because of pain and 57 per cent falling behind academically.
Girls and young women are disproportionately affected, making up nearly six in ten (57 per cent) of children living with chronic pain compared with just over a third (36 per cent) of boys.
Nicolette said the recognition of chronic pain is critical, especially if the Federal Government wants to boost productivity, but also so children can access the care and support they need.
“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,” she said.
“This lack of recognition means chronic pain is missing from policy, analysis and service planning, and our children are paying the price.”
For Anne and Eva, raising the profile of chronic pain and EDS will hopefully go a long way to ensure people understand the daily struggles.
“It is important that she is seen and gets the help she needs to manage her pain, reduce the risk of injuries and dislocations, and live the fullest life possible.
“I hope people gain more awareness about Ehlers-Danlos Syndrome and how this pain can be debilitating for so many—and that more children and adults with EDS and pain-related conditions like this can finally be heard.”
For support or more information, visit: chronicpainaustralia.org.au/kids-in-pain/
