As a pediatric chronic pain specialist and psychologist, I work with principals, administrators, school nurses, parents, and students like Jenna [a pseudonym]. Jenna was a star student and multi-sport athlete during her sophomore year of high school in a Boston suburb. She had many close friends and enjoyed going to school.
After a fall and a fairly minor injury to her leg during a soccer game, Jenna’s outlook changed. The initial injury led to the development of complex regional pain syndrome (CRPS), a chronic pain condition that involves hypersensitivity and extreme pain in the arms or legs. This pain is debilitating and disruptive to the child and her family. Jenna started missing school because of her pain; some days she would have to leave school midmorning because the pain was so severe. Eventually, she stopped attending school altogether, receiving instead a few hours per week of “homebound” tutoring. She quit her sports teams and was often unable to see friends due to her pain.
Within a few months, this previously thriving adolescent girl’s life was drastically altered, and she dropped out of school completely.
This series of events is distressingly common among youth who develop chronic pain syndromes. For some it is CRPS, for others, chronic headaches or recurring stomachaches. Principals, parents, and even some health care providers are sometimes surprised to hear that chronic pain is a significant problem in children and adolescents. In fact, some common adolescent pain problems-such as chronic headaches—affect up to one in four children and adolescents before they complete high school. This cycle of pain and disability creates parents and teachers who feel helpless and confused.
While pain can reduce a child’s quality of life—including sleep, physical activity, and relationships with family and friends—engagement and success in school is an often overlooked or secondary concern. But it can’t be. (See the sidebar.)
Adolescents with chronic pain disorders experience numerous school difficulties, including frequent absences, decreased academic performance, and impaired ability to cope with the demands of the classroom. In fact, rates of school absence for some pediatric chronic pain disorders are among the highest across a wide range of chronic illnesses. Schools that fail to recognize and fully grasp the severity of these health problems can generate inadequate responses in the school setting. This stress can make the chronic pain at the root of the problem worse.
A parent’s instinct in this case is often to keep their child home from school until the pain subsides. It’s understandable; but the research is counterintuitive. As a pain psychologist, I see children and teens with a range of pain problems that devolve into a terrible cycle of school failure and isolation. By the time they reach a specialty pain treatment program (like mine), their academic and developmental course has become completely derailed. By the time they seek help, it requires a major effort to try to reintegrate the kids back into their regular lives.
So how do we adapt to make sure that kids can remain engaged, but also be responsive to their very real, ongoing pain? It requires the attention of all involved caretakers, including school personnel, early in treatment. A key component of this attention is early recognition of the problem and a coordinated response plan from schools.
Schools can make a huge difference in the lives of youth coping with chronic pain. One crucial step is to foster more awareness that this is a significant problem faced by children and adolescents in schools. As the Centers for Disease Control and Prevention (CDC) funds efforts toward “coordinated school health,” we need to think beyond issues such as healthy eating and increased physical exercise, which are vitally important, to include other health challenges.
When more severe cases arise, schools need to put resources into addressing them. One strategy to reduce the likelihood of a long-term case is taking early action. However, for those students whose pain lasts longer, we must respond appropriately. We shouldn’t think of chronic pain as necessarily lifelong or irreversible, but instead as problems that should be taken seriously and responded to appropriately. Unlike more recognized chronic illnesses, chronic pain conditions often cause kids to struggle with reactions of disbelief or dismissiveness. Tragically, these students are often placed into programs designed for other types of problems, such as serious emotional disturbance or cognitive deficits. School reintegration programs need to be tailored to pain patients based on the fact that pain symptoms often wax and wane.
For Jenna, her school took the right path: Teachers and administrators requested consultations with her medical team, and the two teams collaborated to develop a plan for helping Jenna return to school, in spite of her pain. This plan gradually increased the length of her school day, modified the volume of past-due assignments so that she was not overwhelmed with the workload, and revised her schedule to limit the amount of walking and stair-climbing that was required of her in school. Finally, she was also granted access to a second set of books to limit the physical demands of homework. With her guidance counselor stepping up to serve as her “point person,” her health issues were communicated to her teachers and results were relayed back to Jenna’s pain treatment team.
As Jenna slowly worked back toward full-time school attendance, she was able to re-engage in social activities and return to her previous extracurricular pursuits. Over time, her pain became more manageable and life started to return to normal. By the end of the school year, Jenna was fully participating in all aspects of her school life, feeling dramatically better both physically and emotionally.
Such success stories are uncommon, or the result of an unnecessarily long, complicated process. School personnel can have a major impact on helping kids with chronic pain function normally—an important accomplishment that will ultimately help them gain control over their pain.
Sidebar: Guidelines for Responding to Students with Chronic Pain
While chronic pain can be debilitating, with the right accommodations, children can succeed in school in spite of pain. In cases where the child has missed a significant amount of school, adjustments to workloads, daily schedules, and/or deadlines are helpful so students do not become overwhelmed and stressed at the prospect of catching up. Health care workers and school faculty can make a major difference in a child’s ability to manage pain successfully in school by implementing some simple steps:
- Allow a gradual return to school for students who have missed a significant amount of instruction.
- Identify a single person at school who can work directly with the student and his or her parents to create a plan so all involved can respond consistently and constructively to pain episodes.
- Provide an extra set of books to reduce the amount of items the student must carry around school.
- Identify particular challenges in school that might exacerbate a student’s pain (e.g., a noisy lunchroom, walking a long distance between classes) and help the student determine how to avoid or cope with these issues.
- Identify ways a student can gain control of pain in school (as opposed to going home when pain intensifies). Try appropriating a place the student can go for short breaks or allowing visits to the nurse for a dose of pain medication as prescribed.
- Allow the student a few extra minutes to get from class to class to avoid overcrowded hallways.
Deirdre Logan, PhD, is director of psychology services for pain medicine at Boston Children’s Hospital in Boston, MA; associate professor at Harvard Medical School; and editor of the Pediatric Pain Letter.