Chronic Fatigue Syndrome Stigma

The chronic fatigue syndrome stigma hurts patients when it causes people to trivialize this very debilitating disease.

When the Centers for Disease Control chose the name chronic fatigue syndrome in 1988, the participants never realized the stigma they were creating for those afflicted with CFS. It did not occur to them that the name might appear to trivialize the illness. Fatigue is not only a symptom of many illnesses, it is a universal human experience. Many people respond to the word “fatigue” in the name by thinking, “I'm tired now. Why is this an illness?”

The unintended consequences of the naming of this disease is that people with CFS have to deal with its stigma. They feel like their moral character is called into question by others who doubt the truthfulness of their illness experience. CFS is an invisible disease; people with CFS often look perfectly healthy to onlookers. Employers or co-workers may insinuate that people with CFS are lazy or fabricating their symptoms as an excuse to get out of work. Healthcare providers can be dismissive and question their patient's credibility when test after test comes back normal. It is easier to attribute the puzzling symptoms of CFS to psychological causes and refer their patients for psychiatric treatment than to unravel such a complicated medical condition. Even family and friends prove a little skeptical, especially when the disease doesn't resolve and their loved one doesn't get better. After awhile, some patients begin to question their sanity, themselves!

Different people adopt different strategies to deal with the stigma of CFS. Some withdraw from some areas of their social life. Others try to conceal their condition, attempting to maintain the facade of a healthy, normal life while with others, only to collapse from the exertion later when they are alone. Some people control the information they give to explain their disease, focusing on those symptoms that seem more legitimate than just “feeling tired.” Many people find comfort and support connecting with other people with CFS, especially when they are positive and aimed at problem solving rather than focusing too much on the illness.

Perhaps the best way to combat the stigma of CFS is to simply be honest. Speaking up for yourself can be very empowering. Let people know about your illness and how it affects your life. Help them understand not only your limitations but also the abilities you still have. Correct their misconceptions when they arise. Direct them to information that will explain the disease in more detail. Help educate your doctor, and if he is unwilling to learn, find a new one

. Blaze a trail of education, and perhaps those who come after you will be met with greater acceptance and support.

Source: "Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising," by Åsbring P, Närvänen AL. Qual Health Res 2002 Feb;12:148–60.

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