A serious health condition takes a physical, psychological and even financial toll on anyone. But those who have been diagnosed with chronic fatigue syndrome face an additional challenge: convincing the world the disorder exists.
The serious extent of the problem was brought to light recently when a federal worker won a grievance against her employer for forcing her to work in a physically demanding job, despite knowing the woman suffered from chronic fatigue syndrome. The case exposes deeply held stereotypes about chronic fatigue syndrome and how little recognition there is for the disease.
Chronic fatigue syndrome, or CFS, is a complex disease characterized by debilitating fatigue that doesn’t go away even after a person gets a lot of rest, as well as a variety of other symptoms that persist for months, including sore throat, joint and muscle pain or headaches.
There is no blood test or other exam that can positively identify CFS. Rather, CFS is a diagnosis of exclusion, meaning it is made only after doctors have ruled out other possible conditions.
The medical community also doesn’t have a clear understanding of what causes the disorder and how it develops.
As a result of all these elements, many people with CFS are often faced with misconceptions, and stereotypes – for instance, that it’s not a real condition and that anyone who has it is simply lazy, tired or unmotivated.
The extent of the prejudices against CFS sufferers came to light recently in a hearing before the
Teresa Panacci, a chronic fatigue sufferer who works at the Canadian Border Services Agency (CBSA) in Mississauga, launched a grievance after her employer moved her from a sedentary position behind a desk in 2004 to a job in the mail room where she had to lift and move heavy parcels.
She told her boss she didn’t want to be transferred, but was told she had no choice, according to Patricia Harewood, a grievance and adjudication officer with the Public Service Alliance of Canada
CBSA had asked Health Canada to perform a “fitness to work” evaluation once Ms. Panacci complained about being moved to the more physically demanding position. Ms. Panacci was examined by an independent doctor who determined she did seem to meet the criteria for chronic fatigue syndrome.
Despite this, the final report assessing Ms. Panacci’s condition, written by a doctor who didn’t personally examine her, said there didn’t seem to be any physical reason why she couldn’t work in the mail room and suggested the problem was her attitude, not chronic fatigue syndrome.
The assessment report stated: “There is a matter of motivation and job satisfaction involved more than a medical condition,” according to evidence presented at Ms. Panacci’s hearing.
The report noted that since Ms. Panacci felt better when not working in the postal department, she should apply for a new, more satisfying job and help end “a tendency to medicalize such issues.”
Ms. Panacci eventually applied for, and got, a less strenuous job in the same department, although she wasn’t able to return to work full-time until 2009.
The adjudicator ruled in her favour and ordered her employer to reimburse her for time lost to sick leave and the four years in which she was only able to work part-time because of her CFS symptoms.
Details of the case, published on the labour relations board website in January, demonstrate how pervasive negative stereotypes against people with CFS are.
