Stabbing or dull? Burning? Throbbing? Constant or intermittent? How bad on a scale of 1 to 10?
If you've ever tried to describe an ordinary headache to someone else, you know how inadequate these words can seem. And if words fail to capture the experience of a short-lived headache, imagine how much of a gap they can leave in conveying the experience of living with severe, chronic pain.
That was the problem psychologist Anya Griffin, PhD, faced when she began working with teenagers in the Pediatric Rehabilitation Program at Stanford Children’s Health’s Center for Rehabilitation Services. Many of Griffin's patients have complex regional pain syndrome, in which nervous-system malfunctions cause intense pain that can take over patients' lives.
So Griffin searched for a way to let them express a personalized view of their pain without relying on words. She chose a method called Photovoice, asking young patients to take photographs that would help other people understand their journey with pain. The project is one of many examples of how the arts can synergize with medicine, as I explain in a new story for Stanford Medicine magazine.
One patient, 14-year-old Laura (a pseudonym), had been a dancer before the foot fracture that triggered her CRPS. She explained how the Photovoice project helped her:
Partway through the program, Laura videotaped herself and several other patients dancing. “When I was having a really bad pain flare-up, I’d go back and watch that video,” she says. “I’d think, oh yeah, I can do this! The pain isn’t everything. It isn’t me.”
By the time Laura’s parents took her to her grandma’s farm to celebrate her rehabilitation, she had progressed from walking without a cane to walking without a limp to running. With her CRPS in remission, she could also sit in the grass and feed her grandma’s goats, which would have been impossible a few months earlier.
The photo of Laura feeding the goats, taken by her brother on that visit to their grandma's farm, captures the emotions Laura felt. “I was finally at peace with myself,” she says. “I wasn’t battling my foot.”
Previously: What art and the humanities bring to medicine: a look from Stanford Medicine magazine, Containing the pain: Youth use photovoice to capture their experiences, Computer-based program helps physicians monitor and treat chronic pain more effectively and Yes, chronic pain and joy can coexist
Photo courtesy of Laura, reprinted from Stanford Medicine magazine
