Eliza Lawrence has lived with chronic pain since she was a child. 

Years of being dismissed and her experiences being invalidated by medical professionals have left a mark on her and on her mother Kim. 

Eliza and Kim joined three physiotherapists and researchers at the Australian Pain Society Annual Scientific Meeting to discuss chronic pain in children, the language used to talk about pain with children and the importance of communication and therapeutic interactions. 

Their story, which they have nicknamed the ‘Yellow brick road of bulls**t’, was intertwined with the research being presented, providing a personal counterpoint and an understanding of the journey Eliza and her mother took to find answers. 

Eliza has experienced chronic and severe low back pain from the age of about 12 and spent a couple of years visiting multiple healthcare professionals including physiotherapists, GPs and specialists until she was eventually, and belatedly, referred to the Queensland Interdisciplinary Paediatric Persistent Pain Service (QIPPPS) – a move, Kim told the audience, that saved her child’s life. 

The biggest impact, Eliza said, was the inconsistency in attending school. 

Even when she did attend, she found it hard to engage – with her teachers as well as with her friends. 

‘I personally didn’t attend class consistently. 

‘I found that interacting with my peers and maintaining friendships was very, very, very difficult, just because you basically become incapacitated. 

‘I lost my ability to complete schoolwork because of lack of sleep, because of pain and also the physical and psychological ability,’ Eliza said. 

Looking back, Kim said it was a lot for the family to cope with.

Eliza missed between one and three days of school per week, was unable to sit in class for long periods of time and found catching the bus painfully difficult. 

‘There were situations where she would not go to school for a couple of days but then she would want to go to football training and she’d be happy to go to football training and be comfortable running around, kicking the ball and so on. 

‘Then she’d come home and collapse into bed and wouldn’t be able to move for two days. 

‘That was really difficult to deal with, because then I had people saying, “Why is she at home again? She went to football training last night. She wasn’t at school yesterday, she’s gone to football training and now she’s not at school today. It doesn’t make sense,”’ Kim said. 

Eliza moved from a public school to a smaller private school, where she was better supported by the teachers but even then, there was a lack of accommodation, particularly when it came to understanding her needs. 

‘We proposed an idea to my school – that I could do some of my treatment sessions over Zoom, outside of class, so I didn’t have to miss so much school [due to travelling from school to the hospital every week]. 

‘That wasn’t accommodated,’ she said. 

The next speaker was Dr Rebecca Fechner APAM, a researcher associated with the University of Technology Sydney and a senior physiotherapist at QIPPPS, with a focus on pain stigma in schools and the need for pain science education for both teachers and students. 

She spoke about working with teachers and schools to develop teacher-led pain science programs that could be integrated into health curriculum and wellbeing programs. 

Her research highlighted children’s interest in learning about pain. 

‘The young people really showed a thirst for relatable, story-based learning. 

‘They really wanted to get to the nitty-gritty and the neuroscience,’ Rebecca said. 

‘One teacher said, “I think it’s given them a language to talk about all of the parts of pain. Now they can think, ‘Oh, why does it hurt?’ as well.”’ 

Rebecca said schools recognise that pain affects wellbeing, which affects learning. 

‘Linking pain outcomes and learning outcomes might actually breach some of the barriers for implementation. 

‘We’re looking at the outcomes that matter to the kids and families but also to the schools and what they want to achieve, because it isn’t comfortable for them either. 

‘We’re moving away from individual outcomes such as pain, absenteeism and functional disability towards something more helpful – whole school culture and wellbeing.’ 

Communication was a key thread throughout the session. 

Eliza explained that many of the healthcare professionals she saw diminished her pain experience or used medical jargon that didn’t make sense to her as a kid. 

‘It’s important to recognise that there was actually a language barrier because the words and the way that doctors and physicians would relay back to me what I was experiencing felt inaccurate and felt untrue. 

‘It didn’t feel right. 

‘The way that kids specifically communicate their pain can be very different.’ 

She stressed the need to find ways to communicate pain effectively. 

In her case, with the help of the physiotherapist at QIPPPS, she came up with two phrases that represented how she felt and wanted to feel. 

‘One of them was jellyfish; the other was chicken breast. 

‘They went together. 

‘Jellyfish was how I wanted to feel, the free-flowing, liquid feeling. 

‘There was nothing hard; it was free-flowing. 

‘That’s the experience I sought. 

‘Chicken breast was a symbolic representation of how I did feel, which was rigid, very hard. 

‘And that was my pain experience,’ Eliza said. 

‘Although this may seem vague and unprofessional, it was the way that worked and… understanding that and coming up with a clear communication style… was really important and fundamental in starting my healing journey.’ 

Kim said another unhelpful aspect of communication was blame. 

At one point, one health professional blamed another for a treatment not working, while a GP blamed Kim for not taking her vitamins while pregnant. 

At various points in her journey towards effective treatment, Eliza was diagnosed with scoliosis, Scheuermann’s disease and spina bifida occulta and saw more than a dozen healthcare providers ranging from physiotherapists and GPs to chiropractors, acupuncturists, yoga teachers and reiki practitioners. 

‘It was all different, different, different, different for every single one. 

‘Nobody worked together. 

‘Everybody knew about each other; nobody worked together. 

‘There was no answer. 

‘And just, I guess, more excuses and more bulls**t,’ Eliza said. 

Presenting next was physiotherapist and researcher at Monash University Jess Coventry, whose PhD research has focused on communication strategies for the paediatric chronic pain space. 

Jess highlighted the fact that children with chronic pain often feel disbelieved by family members, friends and healthcare professionals and develop their own beliefs as strategies to deal with pain. 

‘In the absence of a clear explanation about their pain, they tried to fill in the gaps themselves and sometimes that was in helpful ways and sometimes it wasn’t,’ Jess said. 

She gave an example from the research literature of a child whose experience of pain included his grandmother who ‘had pain and she died’ and said it was important to unpack those pain beliefs. 

‘If we’re focusing on pain numbers, scales zero to 10, we’re missing lots of pieces of the picture and they’re not ones that we always ask about.’ 

From her research with physiotherapists and podiatrists, Jess presented strategies for talking about pain with children at different ages, from a simple, direct approach that may also include storytelling for younger children to more complex analogies and an understanding of the mind–body connection in teenagers, but always with an emphasis on understanding the child’s pain journey and giving them independence and autonomy. 

‘Overall, we have to start somewhere and that’s understanding the child in front of us and the impact of their pain. 

‘Reassuring, empowering the child and then moving through to education and shifting the focus from pain to function,’ Jess said. 

‘If you’re going to put one thing into your clinical practice, it’s shifting from “How much does that hurt?” to “What do you want to be able to do?” and taking it from there.’ 

In Eliza’s pain journey, it wasn’t until she was referred to specialised pain clinic QIPPPS that things began to change for the better. By this point she had lost any trust in the medical system and the lack of answers she was getting about her pain. 

‘It was a complete game changer for me. I went into it very much not hopeful. 

‘Just “It’s another one that’s not going to work. Whatever. I’m just doing it for the sake of it.” 

‘But yeah, no, it was very important that early on and immediately in the beginning of that relationship, we had good communication styles. 

‘They listened to me. 

‘They responded. 

‘They were thoughtful, compassionate and supportive.’ 

The final researcher to present was senior paediatric physiotherapist and researcher Jen Norton APAM, who, as part of her PhD studies at the University of Technology Sydney and with Kim and Eliza as co-authors, has developed a conceptual framework for nurturing therapeutic interactions with children and their families. 

‘Child and family pain healthcare experiences influence how they engage and interact with health professionals in the future. 

‘That’s something that we forget, as health professionals – these experiences are held and they’re felt, even if it’s a fresh interaction for us,’ Jen said. 

The framework they have developed (as part of a qualitative evidence synthesis of child and parent experiences of therapeutic interactions) has two important aspects – understanding what the child and family have previously experienced, as well as what they want and need from the therapeutic interaction; and prioritising trust and growth together. 

In the conceptual framework, this is represented by a tree, with roots that need nurturing to make the leaves grow.

The research team has also developed a series of ‘curious questions’ to encourage clinicians to reflect on their practice and improve their therapeutic interactions with children and families. 

‘Children, parents and health professionals can flourish together when they’re tending the same garden. 

‘Sometimes we think we’re tending the [same] garden but maybe we’re tending completely different gardens in different suburbs and that’s something to think about. 

‘Thinking about that growth and using reflection to grow new leaves and branches while nurturing therapeutic interactions,’ Jen said. 

‘If we go back to health professionals, they are probably thinking they’re doing the best they can but they should ask themselves, “How do I check that what I’ve said or done today is actually landing in the way that I think it’s going to land?”’ 

Kim added that it’s OK for health professionals to admit they don’t have the answer. 

‘Have an open, honest and vulnerable discussion with your patient, where you might say exactly those words to them. 

‘“This isn’t working and we need to look for an alternative.” 

‘Spend a session discussing those alternatives and considering with the families what else they might want to try. 

‘Acknowledge that whatever your specialty is, there may be some shortcomings there.’ 

Eliza finished the session with a plea to health professionals to tune in and listen to what the person living with pain is telling them. 

‘‘We’ve got so many factors contributing to this experience. 

‘People have got so many different stories. 

‘Mine isn’t more difficult than yours and yours isn’t more difficult than mine but I think we all really need to tune in sometimes. 

Understanding this framework is really important.’