I’m massaging my daughter’s back, a necessary routine, and she says, “I want to know what it’s like to not be in pain for one hour--just one hour.” She sounds so discouraged, so thoroughly exhausted by pain, I scramble for some convincing line of reassurance. “Do you think it could ever happen for me, Mom?” This head of mine, fact-packed by long sleepless nights of researching her conditions and the surgeries they’ve required, comes up with precisely the wrong answer: silence. I would give anything to tell her, sincerely, “Absolutely, kitten.” My daughter is twelve years old, bravely facing the first unsettling days of middle school, but every day she faces something far more challenging: she has Chiari complex 1.5, Klippel-Feil syndrome, scoliosis, and a spinal cord that I suspect has re-tethered to scar tissue from a surgery to untether it. How many parents of children with chronic pain spend sleepless nights racking their brains for answers that modern medicine can’t seem to provide? What if she finds a solution before I do, and it’s the wrong solution? In other words, what are the chances she’ll look to drugs or alcohol to either join a crowd from which pain has alienated her, or to self-medicate for pain? None! I tell myself adamantly. She’s stronger than that. But I can’t ignore the cautionary red flags of recent research.
Chronic pain in adolescents and teens is becoming more and more prevalent, and a new study, published August 31, 2015, reveals 31% of adolescents and teens with medical conditions such as cystic fibrosis, juvenile arthritis, and diabetes reported using alcohol last year, and 17.2% used pot. Assistant professor of pediatrics at Boston Children's Hospital, Elissa Weitzman, head author of the study, writes, "We thought having a chronic illness might be protective, to some extent, given the potential for near-term serious health harm and the high value youth place on staying healthy." However, she found that youth with chronic pain often engage in typical teen risk behaviors. She adds, “They are exposed to marketing, promotion, peer behaviors, and like their peers, [they] are looking to have fun, fit in and 'escape.'"
Fortunately, adolescents and teens with chronic pain don’t appear to use alcohol and marijuana more than the rest of the population; rather, their use roughly reflects that of the general population of youth in America. (A 2014 survey based on student self-reporting showed 9% of 8th graders, 23.5% of 10th graders, and 37.4% of 12th graders reported past-month use of alcohol, while past-month marijuana use among 8th graders was at 6.5%, among 10th graders at 16.6%, and among 12th graders at 21.2%.) However, their risk is higher; Weitzman notes that youth with chronic pain who use alcohol or pot are more likely to forget to take their medications, and often they can’t tolerate alcohol or pot with the medications they use--factors that can deeply exacerbate their problems. Further, their desire to fit in could make them particularly vulnerable under peer pressure. Dr. Ruchi Gupta, associate professor of pediatrics at Northwestern University Feinberg School of Medicine, reminds me of the importance of educating youth about their conditions and compliance with medications before they find themselves in trouble: “There needs to be an open, honest discussion about what they need to do to manage their disease, and the role that alcohol or marijuana or any substance can play in the effectiveness of their medication or how it's helping them.”
My daughter is strong. But enduring the social pressures of adolescence and the teen years can be difficult in itself; growing up in chronic pain presents even more obstacles to overcome. As she develops into an adult, no doubt stronger for her experiences, she needs more than silence. I might not have answers for the most difficult of my daughter’s questions, but it’s time to empower both of us with knowledge, not just empathy--to give her advice and useful resources about how to manage her pain based on the best available information I can find. This is a start.