Chronic Fatigue Syndrome unmasked
My personal quest to understand an
enigmatic and incurable illness
By Brendan K. Edwards
Ever heard of the yuppie flu? How about Chronic Fatigue Syndrome? Or perhaps you've heard of Myalgic Encephalomyelitis? If you're like most Canadians, you probably don't know that all three refer to the same illness. You may also be unaware that May 12 was International Chronic Fatigue Syndrome Awareness Day.
How do I know all this? Well, I've been battling CFS for the past six years.
When I look back, it is difficult to remember when it first began. But, by my fourth year at Ryerson University the fatigue had descended completely like a heavy fog. Reading, writing, focusing, even thinking, exhausted me. My brain, which had once functioned like a high-speed computer (or at least that's how I imagined it) now felt like a dusty filing cabinet.
I dropped out of journalism school and returned to Montreal, convinced that without the stress of university life I would bounce back from my burn out. Little did I know that the mind-numbing fatigue was only the first in a lengthy list of symptoms that would dominate my life for a long time to come.
CFS may sound benign, but if you think that all a sufferer needs is a power nap, you are sadly mistaken. CFS is an incurable disease that ravages the immune system and leaves many completely debilitated. Its most common symptoms are extreme exhaustion, cognitive dysfunction, extended loss of energy following minimal exertion, swollen lymph nodes and sore throat.
About a year after I quit school, I began to develop all of these symptoms and more. I had serious stomach pain every night due to gluten intolerance and a number of other new food allergies. I also became highly sensitive to chemicals in cleaning products and developed strange aches and pains all over. Most frustratingly of all, I still had no diagnosis. I spent my days frantically scheduling appointments with doctors all over the city and my nights scanning online health forums for clues. As time passed, I felt increasingly powerless and isolated. Finally, I found a book on CFS and began to connect the dots.
Unfortunately, my family doctor was not convinced and like a majority of Canadian GPs, refused to recognize CFS. As far as he was concerned, all of my symptoms stemmed from clinical depression. Sadly, the exclusion of CFS in favour of a diagnosis of mental illness is a common thread that runs through far too many patients' stories. Alison Bested, a CFS specialist based in Toronto, has noted that up to 85 percent of her patients have been told that their problems are purely psychological. Couple that with the fact that there are only a handful of Canadian CFS specialists and it is easy to see why CFS patients reported some of the highest rates of unmet health care needs in the 2010 Canadian Community Health Survey.
When I embarked on my own search for a specialist in Quebec about four years ago, I was told that none existed. In the end, I had no choice but to visit a CFS centre in Connecticut. Finally, after multiple trips to the U.S. and a slew of tests for everything from Lyme disease to sleep apnea, I received an official diagnosis.
Although there is no cure for CFS, there are many lifestyle changes one can make to adapt. I've completely overhauled my diet, eliminating gluten, sugar and a number of other foods. I've also learned to pace myself so I don't burn out as often.
Overtime, I've learned to live a life within the boundaries of my illness and I know that I can count on the support of my family and girlfriend when my symptoms start to flare up. Unfortunately, there are thousands of Canadians with CFS who can't say the same. They have not only been dealt devastating blows to their health but also suffer from economic hardship and social isolation. Hopefully, when they tell their stories, some of us will listen and lend our support.
Brendan Edwards was one of the founding editors of Montreal's Siafu magazine.