Can a diagnosis make you sick?
Ten years of muscle and joint pain, insomnia and recurring infections: for Victoria Elliot-Gibson, that was fibromyalgia’s legacy. Then one day, she decided to stop making illness the focus of her life–and got better.
By Sue Campbell
First published in Chatelaine’s July 1999 issue.
Disabled wasn’t a label Victoria Elliot-Gibson ever thought she would use to describe herself. But on a brisk fall day in 1995, as the 24-year-old student made her way across the University of Toronto campus with an armload of books on her aching hip, that’s the word she was turning over again and again in her head. For the past six years, she’d suffered through headaches, yeast infections, joint pain, insomnia, weight gain and more. Four years ago, the symptoms got their own label: fibromyalgia.
She’d thought the diagnosis would be the first step toward getting well, but the doctors she’d seen, the drugs and treatments she’d tried, had all either aggravated or simply failed to relieve her symptoms. She was even focusing her academic work on her syndrome: for her master’s thesis in rehabilitation science, she was investigating how quality of life changes for fibromyalgia patients coping with the syndrome’s chronic pain. But none of it has made her feel better.
By the time she got to the university’s disability services for students office, Elliot-Gibson was limping and wincing in pain. Her reason for being here seemed simple enough: she was seeking a permit that would let her park as close as possible to her classes so she could avoid long painful walks. To get to the front of a long waiting list, she needed to be officially declared disabled.
Fifteen minutes later, coveted parking pass secured, she couldn’t help thinking, though, that one more label was the last thing she needed. Maybe, she thought, the labels were doing her more harm than good.
It’s a controversial diagnosis. Though the term fibromyalgia has been in use since the 1970s and its method of diagnosis approved by the American College of Rheumatology in 1990, there are still many in the medical community who dismiss it as hypochondria. Those who believe in the syndrome say it’s a condition marked by pain in the muscles and other connective tissues of the body. They say it affects between 2 and 5 percent of the North American population, and two-thirds of the patients are women. But there’s no consensus on a cause or a cure. For some people, the symptoms appear after contact with a virus (such as Epstein-Barr virus or even the flu). For others, it emerges after a trauma, such as a car accident or prolonged physical or emotional stress. And then there are the people who report that their symptoms simply develop out of the blue.
All of this gives fibromyalgia much in common with other modern syndromes such as chronic fatigue and irritable bowel. But the symptoms associated with these labels are not so new: one can go back to the 1800s, when a similar set of symptoms was called “railway spine.” As the frequency of train travel and speed of trains increased, the number of railway accidents also rose. Inevitably, there were travelers who ended up with broken bones, bruises and concussions. But there were those who appeared to walk away from train wrecks physically unharmed, only to appear at their doctors’ offices a few days or weeks later complaining of partial paralysis, headaches and general pain. The cause was a mystery. Many in the medical community said the sufferers were nothing but conniving malingerers who were feigning symptoms in order to sue the railroads. Others said it was real enough, but suggested it was primarily a mental affliction that should be treated psychologically. Eventually, the diagnosis fell out of favour, though other labels such as whiplash and posttraumatic stress disorder were applied to the same types of symptoms: pain and disability where no physical cause was apparent.