By day, JessIe Jones was an avid researcher on aging, and on weekends a Harley-driving biker, hiker, rock climber and surfer. The woman never stopped moving. She got six hours’ sleep and had energy to burn. And then, just as she turned 50, she woke up barely able to get out of bed. “I had unbelievable fatigue and incredible pain and stiffness throughout my body,” says Jessie, now 60.
Her trail hikes turned to hikes from doctor to doctor, who dismissed her symptoms as stress, offering antidepressants. “The message was that this was all in my head. It was incredibly irritating. I’d say, ‘I’m not stressed. I’m happy. There’s something wrong.'” One doctor even diagnosed thyroid cancer and removed her thyroid, only to find no cancer.
Finally after five years, a doctor sent Jessie to a rheumatologist, who ruled out everything but fibromyalgia, a condition that causes widespread pain in the muscles and joints. “My response? I wanted to know what fibromyalgia was. But the doctor said little was known. Right then I decided to start researching this condition.”
At first colleagues thought she was crazy to shift her energies to such an unknown area, urging her to stick with aging research or open an arthritis or pain clinic. But Jessie was determined—and unbelievably, she discovered that the National Fibromyalgia Association (NFA) was only six miles from the campus where she worked, California State University at Fullerton (CSUF). The NFA funded her first several research projects and connected her with leading fibromyalgia researchers nationwide. Her early success won the backing of CSUF, and in 2007 she opened the university’s Fibromyalgia Research and Education Center, where she is now the director.
She also applied her research skills to her pain. After traveling to Hong Kong, South Korea and Taiwan to try alternative practices, she found her own therapeutic mix. Five days a week on average, Jessie settles in for an hour and a half of meditation, yoga and the ancient Chinese martial art Tai chi, which she finds helps her approach situations more calmly than she used to. She became nearly vegetarian (she occasionally eats some fish and organic chicken) and re-upped her exercise: walking, golf and dancing (Latin, ballroom and the aerobic fusion known as Zumba).
“As long as I eat well and exercise, my symptoms are minimal,” Jessie says. “They do not affect my life.” In fact, she now sees her fibromyalgia as a kind of destiny. “If I hadn’t gotten this, I wouldn’t have been able to help this large number of people,” she adds. “Every day I get an email from someone about how fibromyalgia had devastated her life. So, on days when I think I’d rather be playing golf, those emails get me charged up to find the answers.”