ABC News: Chronic pain and sickness has been a feature of Breana’s life since she was born, now forcing her to defer year 12

MissingSchool was featured in an article from ABC News. To view the original article click here.

 

Breana has missed out on a lot of school due to her illnesses, but she finds comfort in spending time with her pets. (ABC News: Lottie Twyford)

 

In short:

It’s estimated the same number of children as adults — one in five — live with chronic pain, but the impacts can often go unrecognised.

For families like Breana’s, navigating education around chronic pain has been hard and she’s struggled throughout her childhood to feel believed by teachers and peers.

 

What’s next?

Chronic Pain Australia is calling for more awareness and for the federal government to fund specialist services.

 

At the end of last year, Breana Harris attended her Year 12 formal with the teenagers she’d gone to classes, been on camp and grown up with.

But unlike her friends, Ms Harris wasn’t graduating.

Instead, she was in the midst of making a seriously hard decision.

She decided to defer the completion of her studies due to a recent bout of severe chronic pain which saw the normally active teenager routinely using a wheelchair.

Those bouts of pain have come and gone throughout the teenager’s life, believed largely to be associated with her disability, but this is the most severe.

The now 19-year-old was diagnosed with cystic fibrosis shortly after birth, her mother Marissa Harris said.

That has consistently made accessing education a challenge.

“Historically Breana has spent at least two months a year in hospital because of her chronic illness,” her mum said.

“She has probably between ten and 40 per cent [school] attendance throughout her life.”

 

Breana has used a robot to help connect to school when she’s been too unwell to attend in-person.  (Supplied: MissingSchool)

 

The discovery of an organisation called Missing School when Breana was in year 5 or 6 connected her with a robot which was able to attend school on her behalf while she was too unwell to go in.

Without it, she thinks she would have missed even more school.

She admits leaving school behind and watching her friends graduate was “depressing” but says staying in touch with them outside school has helped.

 

Hard to make teachers and peers understand

Throughout her life, Breana has also struggled with conveying the kind of pain she is in to her teachers and peers at school.

“A lot of people don’t understand, especially if you put on a happy face to kind of push through either for yourself or others,” she said.

 

Mum Marissa Harris says the impact of chronic pain and illness on her daughter’s life has been far-reaching. (ABC News: Lottie Twyford)

 

A memory which sticks in both mother and daughter’s minds is when Breana attended a school camp and was “criticised” by her peers for needing a ride on a golf cart, while others walked back to base.

“Again, [the other students] see her running and being normal and they’re thinking, ‘well, why is she being so lazy?'” her mum said.

She said the problem was many of Breana’s peers had never seen her unwell before, as they generally only saw her when she was well enough to be at school.

Teachers also struggled to understand how much of her effort and concentration Breana was using just to be at school, let alone keep up with the work, her mum said.

 

One in five children live with chronic pain 

Breana is believed to be part of a worrying statistic.

One in five children across the country live with chronic pain, which is the same level as the adult population.

Chronic Pain Australia says those children often miss out on about 22 per cent of their schooling and face barriers when it comes to being believed.

In fact a recent study found 20 per cent of teachers didn’t believe their students’ pain.

 

Pain scientist Joshua Pate said it was hard for observers to understand what chronic pain sufferers were actually going through. (ABC News: Andrew Whitington)

 

Joshua Pate, a pain scientist at the University of Technology Sydney, described those as “surprising” levels given it was generally associated with an older demographic.

One of Dr Pate’s biggest concerns was stigma, particularly from students and teachers who formed such a large part of a child or young person’s social network.

“When a condition fluctuates, it’s quite hard for an observer to kind of navigate and understand what’s going on,” he said. 

From Dr Pate’s perspective, there was good news, in that more and more research was being done into how chronic pain could be treated.

He said the evidence now was the active, rather than passive, treatments and strategies were the best approach.

Of course, for that to happen, it means a patient and their family need to be able to access multidisciplinary treatment like pain specialists, doctors, physiotherapists, psychologists, nurses, occupational therapists and other allied health workers — all under the one roof.

 

Chronic Pain Australia chairperson Nicolette Ellis wants more funding for specialised paediatric pain services. (Supplied: Nicolette Ellis)

 

More paediatric pain clinics, as well as more awareness, is exactly what advocacy body Chronic Pain Australia is calling for.

Chairperson Nicolette Ellis said there aren’t enough of those clinics around the country, estimating there to be only six at the moment.

And she says what’s more concerning is that many children face long wait times before even getting in.

 

A spokesperson for Health Minister Mark Butler wouldn’t commit to directly funding more paediatric pain clinics around the country.  (ABC News: Nicholas Haggarty)

 

A spokesperson for Health Minister Mark Butler wouldn’t commit to that when asked.

Instead, they said the government had already committed to funding primary health networks around Australia to deliver multidisciplinary care.

They also outlined a range of commitments for different organisations intended to address the impacts of chronic pain, including for children.

The spokesperson said a new national strategic framework was currently being worked on, which would include a focus on the transition periods.

That’s a stage Breana’s family is currently navigating.

Having just turned 19, she is now having to find her way in the world of adult services — a journey which carries challenges all of its own.

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