Monday, January 30, 2012

Who comes up with these names?

Who Comes Up With These Names? A Plea for Truth in Labeling of Medical Conditions

Labels stick and can lead to underestimating the seriousness of a disorder.
Published on January 30, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

Labels matter. We quickly form judgments based on them. If we hear
someone called lazy, the label "lazy person" attaches in our mind even
though we may not have even met the person. The same is true for
labels given to many medical conditions. If the label for an illness
uses language such as "fatigue," we abstract from our experience and
think we know what it's like to suffer from it.

Some medical disorders have been named after the researcher who
discovered or described them in the medical literature (Alzheimer's).
Others were named after a famous patient (Lou Gerig's disease). The
result: instant legitimacy.

The trend, however, is to name illnesses and pain conditions by
describing their primary signs or symptoms. There may be sound reasons
for this trend, but it can lead to inaccurate labeling of people and
to unnecessary suffering by those who've been diagnosed with the
disorder or disease.

For example, people with Rheumatoid Arthritis are frequently put into
the same category as those with Osteoarthritis—a common condition
usually associated with aging in which the joints become painful and
stiff. But Rheumatoid Arthritis is a systemic autoimmune disease.
Joint pain and stiffness is just one of its many symptoms. The
suffering of those with RA is often trivialized because they're lumped
together with those who have arthritis. People with RA are told it's
no big deal, and often have to put up with insensitive comments, such
as "You're too young to have aching joints."

A second example. People withFibromyalgia (fibro: muscle, myalgia:
pain) do indeed have muscle pain. But anyone can have muscle pain if
he or she moves wrong or overdoes it during a work-out. The muscle
pain of Fibromyalgia can be so debilitating that some people can't
move without excruciating pain. In addition, muscle pain isn't the
only symptom of Fibromyalgia; yet, there you have it: fibro (muscle)
myalgia (pain).

A third example. People with Chronic Fatigue Syndrome do experience
fatigue. But when those of us with this diagnosis hear others say,
"I'm tired too," we know that we've been labeled in a most inaccurate
way and that the seriousness of our illness has been disregarded. We
also know that the painful label "malingerer" may not be far behind.
I've written about the absurdity of that name in my piece The Stigma
of Chronic Fatigue Syndrome. I encourage you to read it if you want to
understand our frustration with this destructive label.

[major snippage]
* * *
If they give it a serious name, then they have to take it seriously.  But to attach a laughable name like CFS or Restless Leg Syndrome, allows them to make fun of it, and of the patients who suffer from it.  See "Osler's Web" for the way CDC scientists privately poked fun at the patients who were counting on them for answers. 

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