Awareness
WED/RLS Wordle
Tuesday, May 27, 2014
Recently the WED Foundation created a wordle that has
generated a lot of interest. What is a
wordle? Glad you asked, since I didn’t
know what it was either. A wordle is a
“word cloud” created from various words on a topic. The WED Foundation asked people to describe
in one word what living with WED/RLS was like, then used those words to make a
very unique wordle. If you haven’t seen
it, please go to the WED Facebook page and scroll down a ways.
This wordle is amazing.
It is informational. It is
truthful. Most of all, it is scary and
depressing. Terms such as “herky-jerky
legs”, “buggly”, and “ikky” can make this disease sound trivial and bearable
but also describe what it feels like.
“Misunderstood” is a fact of life most of us have lived with for a long
time. We have not been taken seriously
and in many, many cases that is still true.
Finding words that will accurately describe what we feel is almost
impossible—it is so different in many ways for each one of us.
Even when we get brave enough to admit that WED/RLS is
“insanity”, “unending”, and “tortuous”, friends, family and the medical
profession don’t take us seriously. In
their minds, having restless legs, arms or other body parts is minor; a small
annoyance at best. I remember when
fibromyalgia and chronic fatigue syndrome were considered maladies made up by
people who were just simply lazy. Now
they are accepted and widely known as real conditions; the public at large
knows exactly what they are.
I was thinking about what words might be used to create
wordles for other chronic conditions or diseases. Probably most of the words from our wordle such
as “relentless”, “excruciating”, “unrelenting”, and “incurable” can be used to
describe other diseases. Take out those
words, plus the ones such as “heebie-jeebies” and you are left with two that
are major players in our world.
The first is “chainsaw”.
While that may get chuckles, it is a deadly serious word. Too many people have said they would like to
cut off their legs just to get away from the misery but are afraid of phantom
restlessness. Again, this sounds funny
but it isn’t—name one other disease where you would think about cutting off
part of your body rather than endure the feelings. We are not talking about pain here (although
many suffer with that along with the restlessness); pain is accepted in our
society—having jumpy legs/arms is not.
The other word that makes this wordle unique is
“lonely”. I fully understand that every
person at one time or another feels lonely.
But there is a loneliness that comes when you are surrounded by people
who have no clue what you are going through.
Chemo patients, dialysis patients, people with dementia, all have
enormous support networks, which is wonderful.
WED/RLS affects 7-10% of the population and yet we walk the floors at
night with no one beside us, we look out at the darkness without having anyone
holding our hands.
This wordle can be depressing—just like our lives can be
dealing with WED/RLS. But I prefer to
look at it as something new and refreshing that can be used to create
awareness, open conversations and best of all, remind us that we are NOT
alone. I may not have the exact same
symptoms as you, or take the same medications as you, or have the same outlook
as you—but I KNOW WHAT YOU ARE GOING THROUGH.
The same moon shines over us all.
So while we may not know each other personally, we can work together so
that one night, if we find ourselves walking the floors, WED/RLS will not be
the reason.
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