Tuesday, September 9, 2008

“Not all chronic diseases are equal"

Society can tend to be really fickle about most any subject you can name. Society, particularly Western (and in the United States to the nth degree!) society, also puts a tremendous amount of stock in how "productive" someone is, how hard they work. Put those two things together and you come up with varying degrees of what is considered a "legitimate" enough disease or condition, to warrant acceptance, empathy, or understanding (or heaven forbid, a loss of productivity). Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc has this to say about how illnesses are socially categorized, greatly impacting the level of care and resources available to those who suffer from invisible illnesses:

“Not all chronic diseases are equal. Some are more accepted than others,”

There are more than 80 autoimmune diseases, and many can be considered invisible, she says. But there are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM (Fibromyalgia) and CFS (Chronic Fatigue Syndrome), she says. According to The CFIDS Association of America, the condition’s name trivializes the illness as little more than tiredness, even though the illness is associated with a “constellation of debilitating symptoms.”

According to the Centers for Disease Control, "CFS can be as disabling as multiple sclerosis (MS), lupus, rheumatoid arthritis, and congestive heart failure," and recognizes these conditions as legitimate medical diagnoses.

While invisible illnesses (and conditions) are gaining more acceptance and respect in the medical field (although not as much as it should), social acceptance has been much slower in recognizing them. This is particularly impacting when it may take years to get a diagnosis, while the person suffering is viewed as lazy, a complainer, or just a bad "worker" because they call in sick or can't move as fast as others. I remember constantly having to battle my employer over sick time, or changing my duties, etc. because the assumption was that I was making up excuses not to work. Having always been a highly productive worker in my life to that point, I even believed about myself, that I sucked as an employee (and person). I bought into the socially constructed norms that tell us there is something wrong with US when we cannot perform to its expectations.

From the 19th century on, sociological and economic models really attempted to define and recreate people as machines. The medical model of treatment relies heavily on this. "Fix" the machine and get it productive again. If it can't be fixed, ridicule or discard it. However, there is one really important thing that these models don't take into account: We are NOT machines. We are more than the sum of our parts, and a hell of alot more than what we "produce".

And here is the rest of it.


brenda said...

People should get educated about these illnesses, especially employers so they will have a better understanding about what to expect with the employees who go through this on a daily basis. Then maybe they can work together and find a way to compromise on the work duties.

Diane J Standiford said...

Great post. Perfect post.