Conditions
Labels stick and can lead to underestimating the seriousness of a disorder.
Published on January 30, 2012 by=A0Toni Bernhard, J.D.=A0in=A0Turning 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=97a common condition
usually associated with=A0aging=A0in 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=A0(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=A0The Stigma
of Chronic Fatigue Syndrome. I encourage you to read it if you want to
understand our frustration with this destructive label.
Lastly, here's the most absurd name for a medical condition I've yet
to encounter (readers may be able to top me on this=97please leave a
comment if you can!): Restless Leg Syndrome. I've suffered from this
neurological disorder for over 20 years. Let's see how accurately the
label describes the disorder.
Restless:
When I get an attack of RLS, my legs aren't restless. They are seized
by waves of gnawing unpleasant sensations that are so unbearable, I'm
forced to move my legs to try and get relief. After each wave, the
sensations subside, only to return within another minute or two. This
can go on for hours. When an attack comes at night (which is when RLS
most often occurs), it is impossible to=A0sleep. The result can be a
sleepless night and one very long and unpleasant day ahead.
Leg:
Sometimes I get these waves of gnawing sensations in my hands. Others
get it in their arms. There's nothing exclusively "leg" about Restless
Leg Syndrome.
Syndrome:
I object to this label in general because it trivializes what can be
debilitating suffering. RLS is a neurological disorder. It's not a
syndrome. Neither is so-called Chronic Fatigue Syndrome.
This is the first time I've shared with anyone but my husband and my
doctor that I suffer from Restless Leg Syndrome. I've never even told
my two kids. Why? Because the name is downright embarrassing. The FDA
has approved two prescription medications for it=97Requip and Mirapex.
These are Parkinson's=A0drugs=A0which, when taken in low doses, help
prevent an attack of RLS.
You'd think that Federal Drug Administration approval of two
medications for a disorder would make it legitimate. Not so. The
labels "restless" and "leg" are just too silly. Last year, I heard a
late night comedian make cruel fun of it, saying, "And now there's a
drug for Restless Leg Syndrome. Come off it. Your legs are restless?
Get a life." Ironically, I only heard his comment because I was awake
due to, yup, RLS.
So, I've come out of the closet: I have Restless Leg Syndrome. On
nights when the Mirapex doesn't work, you'll find me pacing the
floors, willing to try just about anything to keep the unbearable
sensations from continuing. No matter how cold a night it is, I put
ice on my feet and calves; or I wrap my legs so tightly in ace
bandages that I have to be careful not to cut off the blood
circulation. Sometimes these home remedies help, but usually they
don't because they're only effective if I catch an attack right when
it starts, and RLS only wakes me up once it's "up and running" so to
speak. And that means I'm looking at another night of broken sleep.
As the title of the piece says: Who comes up with these names?!
=A9=A02012 Toni Bernhard
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