Sick and tired
There is a scene in a season 5 episode of ’80s sitcom The Golden Girls where one of the main characters, Dorothy, who has been battling profound tiredness, confronts the doctor who had failed to diagnose her.
After months of searching for answers, she tells him she finally knows what is wrong with her.
Launching into a blistering monologue, she holds him to account for ignoring her symptoms and making her doubt herself.
“I came to you sick and scared and you dismissed me,” she says, looking him straight in the eye. “You told me I wasn’t sick; you told me I was just getting old.
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“Well, I really am sick. I have chronic fatigue syndrome. That is a real illness.”
It’s a moment that will likely resonate with many of those who suffer from the complex and debilitating condition.
Commonly referred to as ME/CFS, myalgic encephalomyelitis and chronic fatigue syndrome is a life-changing disease that affects about 444,000 Canadians.
Classified as a neurological disease in the World Health Organization’s International Classification of Diseases, the long-term chronic condition affects the nervous and immune system, affects more women than men, and children and adults of all ages.
The debilitating condition is characterized by an overwhelming lassitude, extreme tiredness that can see patients confined to their bed for hours on end or housebound for an indefinite period.
Other symptoms include (but are not limited to) cognitive challenges referred to as brain fog, which can manifest as word-finding difficulties, memory difficulties, and attention and concentration deficits; migraines; light and sound sensitivity; gastrointestinal issues; orthostatic intolerance; thermostatic instability; and sensitivity to chemicals.
Patients often need help with tasks and endure mobility problems and pain and are unable to work.
Bounced from pillar to post, their first port of call is usually a family doctor, who may misdiagnose them, disregard their very real challenges, or direct them to seek counsel from specialists.
The burden of education often lies on the shoulders of the patients, who may find themselves having to convince physicians they are not malingering.
“Theoretically, it should be relatively straightforward to diagnose; there are diagnostic criteria that have been adopted,” explains Dr. Stephen Goulet, an internal medicine specialist who works at St. Boniface Hospital and Grace Hospital.
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“The problem is a lot of doctors have learned certain things about it that are no longer useful, that are outdated both in the diagnosis and the treatment.”
One of the primary symptoms of ME/CFS that differentiates the syndrome from someone who is merely fatigued is post-exertional malaise (PEM), which impedes the body and brain’s recovery process, even after using small amounts of energy.
Simple physical or mental activities or a combination of both can leave people feeling completely exhausted and lead to an increase in other symptoms.
“The crux of it is that it is a condition that is chronically fatiguing. It’s not just in someone’s head; I want to make this very, very, very clear,” Goulet says.
When someone with CFS overexerts themselves, they crash, and can end up being bedbound for days or even weeks.
“That really is the (symptom) that distinguishes things because almost every chronic condition under the sun we recommend activity, even pushing yourself and most people end up feeling better. This is the one condition where that’s not the case,” Goulet says.
Getting the correct diagnosis is just the beginning of what can sometimes be a frustrating journey..