At 42, Gina Libby has lived with chronic pain for more than 20 years. Yet it hasn’t stopped her from making an impact; she’s on the frontlines of pain advocacy, using her experience to influence health care policy and teach others.
As a young girl, Gina was diagnosed with severe scoliosis, or curvature of the spine, that caused significant pain. An athlete, she fought through it to continue playing sports in college until the pain became just too much. At 20, she had a long spinal fusion, an operation that permanently connected all the thoracic vertebrae and most of the lumbar vertebrae into one solid structure in her body.
For more than 15 years, the surgery gave her some improvement, but she still lived with nagging, achy muscle pain. Then about five years ago, she began to experience extreme nerve pain shooting down her legs, impairing her ability to walk and perform her job as a Senior Food and Drug Investigator for the state of California. She scheduled an outpatient procedure—spinal decompression surgery—meant to alleviate her nerve pain.
Instead of relief, complications from surgery turned her world upside down. She experienced neurological impairment of both legs and two dropped feet; Gina was left unable to walk. She entered rehabilitation immediately.
“The most interesting thing about that whole experience,” says Gina, “is that by the grace of God, for about the first two and a half months, I had absolutely no pain. So here I was cruising around on my walker, happy as a clam because I wasn’t in pain.” The realization that being on a walker was so much less disabling than life with chronic pain, even though some people pitied the woman on a walker, “was a rude awakening to me.”
Now Gina uses walking poles that many people mistake for athletic equipment; strangers frequently joke around with her by asking if she’s headed out to go skiing. “Nobody would ask that if they knew I was just out of surgery and had lost my ability to walk,” she says. She loves cheerfully teaching people about the benefits of the equipment.
“I don’t know that there’s any aspect of my life that hasn’t been affected by pain,” says Gina. The lives of her husband and daughter—as well as those of her parents and in-laws, who help her as much as they can—have also been greatly altered.
But bitter she’s not. “What I’ve learned most is that I am…and you are…more than pain. And we’re more than our bodies,” says Gina. “Getting in touch with that, having the strength and support to discover and be willing to love the ‘new’ you is a huge learning point. It’s about acceptance, although it’s counterintuitive to accept pain.” She has learned numerous coping skills through counseling and cognitive behavioral therapy.
“I can’t go climbing in Yosemite like I did when I was 19,” she says. “But I like who I am more, the person I’ve become in terms of my attitude and my compassion for others. For many of the years I had pain, I didn’t like me.” Now she channels her feelings about life with chronic pain toward efforts that help others.
“This experience of pain is humbling, to the point of realizing we’re all in this together. When one suffers, we all suffer,” says Gina. She currently serves on the advisory councils to the Northern California Pain Initiative and the Southern California Cancer Pain Initiative; with these groups, her focus is on improving pain care legislation.
“The personal connection that occurs through advocacy is so rewarding and inspiring, because I hear of people almost daily that deal with things so much worse than mine,” she says. “The fact that those people are still up and fighting and making a go of it…that’s something I want to be a part of.”
Gina says an unbalanced public perspective on chronic pain—especially the focus on a minority of patients who abuse prescription medications—has to shift. Without that shift, she says, millions will continue to go undertreated. At the same time, she explains that many health care providers aren’t taught pain treatment or management during school, so those prescribers unintentionally exacerbate the problem by undermedicating, overmedicating, or just plain incorrectly medicating patients.
The lack of education about chronic pain—its origins, treatment approaches and long-term impacts—puts health care providers at a disadvantage. And the public—also lacking knowledge—is less than understanding about chronic pain, says Gina: “People in pain are playing catch-up with those suffering from other conditions. The tragedies we live with are not death tragedies, but they’re still loss. People don’t understand how powerful it is.”
Gina says we desperately need a cultural shift toward acceptance of chronic pain as a recognized health condition. She points out that we currently don’t have a medical code for the treatment of chronic pain, which impacts 100 million people in the US. Until health care providers are reimbursed for their work—and pain treatment is taught in schools—how can we expect the public to catch up and support those in pain? As she puts it: “We’re all screaming for help, and we’re wondering, who’s listening?”
“Pain takes away independence,” says Gina. Those in pain depend hugely on the support of family, friends and health care providers to make their way in the world. Being a chronic pain advocate, she says, has helped her feel stronger, more self-driven. “We advocates, we’re a big family,” she explains. “This work has gone a long way toward re-building my self-esteem and sense of self-worth. It’s saved my life.”
She says it’s possible for people in pain to choose a new way to live, in spite of their experience. “You won’t necessarily have the life you’ve had before,” she says, “but you can define a beautiful new you, a strong you, that can emerge. It’s like the phoenix rising.”
– By Jenni Prokopy