Jessica started her freshman year of high school in great spirts. Then, in early October, she began to get daily headaches after school. Her headaches typically began around 4 PM and persisted through the evening making it difficult for her to complete homework. When Jessica couldn’t finish assignments she either avoided her teachers or she went to the nurse to avoid class altogether. By the end of October Jessica was experiencing chronic headache pain and her school attendance became very spotty; she was missing almost all of her morning classes and going to school only two or three days a week for her afternoon classes. She was diagnosed with daily tension headache, prescribed medicine to help break the cycle of headache pain, encouraged to get more sleep and daily exercise, and told that she should return to a normal school schedule. However, the unwieldy combination of Jessica’s ongoing pain, anxiety-provoking pile of unfinished homework, unsympathetic teachers, alienating questions from peers (e.g., “what’s wrong with you?”), and chronic fatigue from not sleeping well made her increasingly uncomfortable in the school setting, and fueled her desire to stay home from school even more.
Many people are surprised to learn that a version of this scenario plays out for millions of kids every year. Over 50% of kids with pain have some level of school impairment including repeated absences, difficulty keeping up with homework, lower grades, and increased risk for peer victimization. On average, kids with pain miss four to five days of school per month, and children with high levels of pain miss substantially more. When children are out of school for even a short period of time they feel overwhelmed with make-up work, fall out of the current social scene, and feel disconnected from the classroom environment. Indeed, the secondary stress associated with missing school can make getting back on track quite difficult.
Compounding this situation, there is increasing concern that the present culture of many schools may be a risk factor for the onset of persistent pain. Chronic pain occurs in a staggering one of every five kids and is associated with persistent stress. It’s not uncommon for adolescents to feel school-based pressure such as the need to obtain excellent grades, participate in high level sports, be popular, engage in community service, and so on. This adolescent version of “having it all” can be a source of chronic daily stress for many teens. And, just like too much exposure to the sun can be harmful to skin, too much exposure to daily stress can be harmful to nervous system, priming it for the onset of chronic pain.
While school-based stress is not necessarily a trigger for every child who has chronic pain (other factors such as genetics, inflammation, infection, injury, and mood can play a primary role), almost every child with chronic pain struggles in school. For all children, there is an inherent level of stress associated with the school day; waking up early, academic pressure, and social challenge, for example. For children with pain, these problems are magnified due to repeated absences, frequent doctor appointments, poor sleep and fatigue, difficulty with concentration due to pain, medication side effects, and prolonged social disruptions. Unfortunately, reducing involvement in school, or school avoidance, only tends to make chronic pain problems much worse.
Happily, the opposite is also true. Children who are supported in maintaining regular daily routines, including adhering to typical school schedules, tend to have better sleep cycles, more positive peer relationships and greater success at school. Staying involved with school also means that kids have less time to focus on their symptoms and more distractions in their day; both of which are directly linked to having less pain. For these reasons, specialists who work with children who have ongoing pain and medical stress often encourage kids to return to typical school schedules, with adaptive supports and modifications put in place as needed. This approach is used even when school-based stress may have been a trigger for pain in the first place.
Children may initially be very resistant to the idea of increased school involvement because, in the context of their pain, they may not feel they can be successful with academics, hanging out with friends, or even simply sitting through their school day. Getting a child with pain back on track at school can also be hard for parents to navigate; it takes time, energy, diplomacy, and persistence to develop appropriate plans for supporting a child with pain in the school environment. Staying focused on the idea that getting a child back to school can reduce pain and improve long-term outcomes is paramount to success. In most cases, the goal is forward progress, even if the progress is at first measured in inches not feet. Here are some helpful tips for parents who have a child who is struggling with school due to ongoing pain or persistent medical stress:
- Establish and Maintain a Collaborative Relationship with School. Parents should approach all school interactions with an understanding that school staff may have limited knowledge about their child’s condition. Be willing to educate staff and provide doctors’ notes for verification as needed. Keep in mind that parents’ positive attitude towards school and school staff goes a long way to reinforce a child’s positive attitude towards school as well.
- Identify a School-based Ally for Your Child. Work with the school to identify a nurse, resource room teacher, guidance counselor, or other person who can provide additional support to your child during the day, if needed. Often, it’s possible to arrange for your child to have one or more brief breaks in the day to visit this person and obtain 10-15 minutes of respite from the classroom environment.
- Set Reasonable Goals. Work with the school and your child to identify one or more school goals that need attention (i.e., completion of missed tests, increased attendance, etc.). Set clear guidelines for success and make sure that there are clear stipulations for what happens if a child does not follow the plan. Plan to increase school goals in small increments and be on the lookout for school related factors (learning difficulties, peer issues, environmental triggers) that may be barriers to progress.
- Stay Focused on Long-term Adaptation. If a child has been absent for many weeks or months, it often makes sense in the short term to forgive non-essential assignments or develop alternative ways for a child to demonstrate mastery of a subject. This strategy can help children to get back on pace with their peers, reduce the stressful overload of make-up work, and increase opportunities for kids to feel successful in their school environment.
- Request a Formal School Accommodation Plan. In the US, accommodations for medical or psychological conditions falls under the 1973 Rehabilitation Act termed “Section 504.” If a school is not responsive to requests for accommodation or support, parents should not be shy about submitting a written request for a formal school plan. This can help to encourage a joint effort in setting clear expectations and collaborative guidelines for parents, kids, and school staff.
- Seek Additional Support. Working with a psychologist, licensed social worker, or other health professional who can teach parents and kids adaptive coping strategies for managing pain symptoms and school-based stress can increase a child’s confidence that pain can be managed in the school setting. School advocates can also be useful supports, helping to brainstorm and implement adaptive plans and appropriate school-based accommodations.
Rachael Coakley, Ph.D.,is associate director of Psychological Services in the Pain Treatment Service and director of the Comfort Ability Pain Management Program, Boston Children’s Hospital. She is also assistant professor, Department of Psychiatry, Harvard Medical School.