Eliza Lawrence and Cooper Smylie are two young adults whose lives have been irrevocably changed by chronic pain. Eliza, 19, has struggled with debilitating pain for almost five years. At the same time, Cooper, now 10, had come down with CRPS, or complex regional pain syndrome, following a playground injury six years earlier. For each, the effect has gone beyond individual pain; it has changed their families’ lives and focuses.
The real turning point in Cooper’s life came three days after he fell and bruised his knee on the school playground. The attack caused debilitating “screaming pain” in his foot. This started the cascade into a situation which has now removed every avenue by which patients might manage pain effectively. Eliza’s path changed direction after a concussion suffered in a high school soccer match. Though this one incident ignited a long and painful diagnosis of scoliosis and Scheuermann’s disease. Both kids bear the weight of chronic pain, which drastically affects their ability to learn and participate in everyday activities.
The Impact on Education and Employment
Eliza’s chronic pain has had an enormous impact her quality of study. She expresses her anger through the lines, “Even today, there are times when I am unable to sit up and study.” Her condition has raised alarm about her long-term prognosis. Most concerning is that the exacerbated pain from extended sedentary behavior could prevent her from being able to keep any desk job.
Eliza’s already been through a number of possible solutions. She came to the decision that the only way she can move forward is if she works for herself and builds her own business. This speaks to her need for stability and the reality of having to go where her health needs required.
Sadly, this means Cooper’s mother, Melinda Smylie, has reduced her work hours. She does this so she can take him to his tons of medical appointments including OT, ST, PT and so many more. Melinda describes the emotional toll of watching her son suffer: “When your child’s in so much pain and there’s no clear answers, that’s really awful and heartbreaking as a parent.” This emotional burden is now compounded by financial strain as the family rearranges their work schedules to accommodate Cooper’s needs.
Family Adjustments and Financial Strain
After Cooper’s diagnosis, the Smylie family underwent major lifestyle changes. They reduced the size of their home and took to the road in a trailer. Their mission? To discover hotter places that would help relieve his chronic pain. As Cooper explains of his condition, “Sometimes my foot feels like super-heated… or like I’m walking on hot coals. There’s no doubt that families living with chronic pain go to great lengths in their search for relief. This change marks a further trend toward them that is encouraging.
Eliza’s family, too, has faced challenges. Eliza’s mother Kim Lawrence, who worked full-time as a nurse, eventually had to cut back her hours. She only works four days a week now, one day reserved for different appointments and therapy sessions. So it’s not surprising that parents caring for a child with chronic pain frequently leave the workforce. According to Chronic Pain Australia, nearly 1 in 5 of these parents eventually have to quit their jobs entirely.
The financial implications extend further. Robert Smylie, Cooper’s dad, has increased his time on the job as a construction supervisor. He’s taking these steps to compensate for the loss of income from Melinda’s decreased work hours. This burden of juggling work and family caregiving responsibilities is felt by millions of families in the same situation.
The Broader Picture of Chronic Pain
The struggles that Eliza and Cooper have recently experienced are not unique. Chronic Pain Australia indicates that nearly half of parents caring for a child with chronic pain adjust their working hours. In reality, one-third (30%) say they have had to cut back on their own work hours or take unpaid leave. This begs enormous questions around workplace policy and support to families navigating a life with chronic conditions.
According to professor Fabrizio Carmignani, the social cost of chronic pain is around 3%-5% of the gross domestic product per year. These statistics highlight the urgent need for systemic changes to address the prevalence of chronic pain among children and its ripple effects on families. Nicolette Ellis emphasizes this necessity: “This highlights the urgent need for service planning and investment that matches the prevalence of chronic pain in children.”
Both Eliza and Cooper’s journeys are shining lights on a national understanding that there is an emerging crisis in the management of chronic pain, particularly in children. We can’t even begin to imagine what families face as they fight these battles. Most of them fight through extreme physical pain, working constantly to deal with emotional and new financial burdens.
