A broken leg, the common cold, breast cancer
Could you identify a symptom or two? Would your doctor know what to do for you? Chances are you’ve answered “yes” to those questions. You can probably even make a guess at the type and length of treatment, and whether or not you would have to miss work.
OK, same questions, but with these terms: fibromyalgia, chronic fatigue syndrome, complex regional pain syndrome. Feeling a bit less certain of your answers? Guess what, your doctor feels the same way. Along with thousands of Canadians.
Things You Can’t See
Welcome to the painful world of “invisible disorders”. These conditions carry general symptoms, and are often only diagnosed by a process of elimination (and a tenacious doctor and/or patient). Some of these conditions – particularly in the area of mental health – are beginning to get wider recognition, but many remain unknown to patients and doctors alike. Take fibromyalgia, for example. Affecting mostly middle-aged women, this condition is characterized by anxiety, headaches, mood swings, and generalized, widespread pain. There is no known cause, no easy diagnosis, and no go-to treatment.
And worse than that, it is often dismissed as “not a real illness”. As the National Fibromyalgia Association puts it, “Fibromyalgia poses a challenge beyond symptom management to those who are diagnosed with it: the struggle for credibility”. Even with the 2008 release of Lyrica, a pain-management medication targeted specifically at fibromyalgia, the New York Times wondered if fibromyalgia sufferers weren’t just “chronic complainers”.
These “invisible disorders” have visible costs. In 2014, 519,000 Canadians reported suffering from fibromyalgia. Nearly 424,000 of these were women, representing 2.8% of the population. A 2016 study of fibromyalgia sufferers in Quebec concluded that their condition resulted in a yearly personal cost of $3,804 (in medications, treatments and specialist visits) and 3.19 weeks a year of missed work. If you widen these statistics out to various chronic pain conditions, and estimates rise to a cost of $16 billion per year in services and lost productivity in Canada alone.
A Ray of Light
Sometimes all it takes is a glimmer of hope. Paulette was at her wit’s end with the pain. “I was getting constant headaches, and my joints were inflamed – it was difficult to walk,” she recounts. “I missed nearly a week of work.” She began to suspect that what she was feeling was more than just “achiness” (as her husband dismissively called it). She contacted Health Navigator – the health-service partner included in her employee health benefits – and spoke to a health information specialist about her conditions.
Within 24 hours, Health Navigator equipped her with an information package about fibromyalgia, including common symptoms and potential treatment options.
Armed with more details, Paulette approached her healthcare provider. Together, they were able to eliminate other possible conditions, and design a lifestyle and treatment plan to help her manage her condition. Since then, she has consulted Health Navigator about three additional conditions. No longer the “constant complainer”, Paulette was able to light her own path to wellness.
“The information packages from Health Navigator reinforced that I wasn’t just imagining things,” said Paulette. “My conditions were real. They had names. And finally, someone believed me.”
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