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tansy
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xx Fatigue - Why I never use the "f" word
« Thread started on: Mar 11th, 2005, 6:36pm »

Fatigue - Why I never use the "f" word

by Kate Duprey

Everyone on earth has a unique point of view. We also
have things in common. At one time or the other
everyone on earth (including your least favorite
person) has experienced happiness, laughter, anger,
jealousy, fear, tears, and the common cold.

In big picture words it makes little difference what
language someone speaks, what their gender is, where
they live, how much money they have, what their
religious or political views are - we all have these
experiences in common.

So how can things be both common and unique at the
same time?

All that means is - even though we use universal names
for things - we may not be referring to the exact same
thing.

Why? Well for example, women who have given birth have
experienced something both universal and unique. Me,
I've always been lucky if I made it to the hospital my
children were born so quickly; a beloved sibling,
however, was in labor for three days with one. Same
experience - right? Yes and no.

This is in no way demeaning, but people who have never
experienced childbirth are simply not part of the
club. Some have yet to experience it; some choose a
different path; and some, such as say men, will never
experience it.

Childbirth means many things to males, but no matter
how nicely you put it, they are outsiders and will
always be "outsiders."

Male attitudes toward childbirth can range from "good
grief what are you screaming about - it can't possibly
hurt that much - it's not hurting me that much to
"it's like watching a car wreck - there's blood,
screaming and nothing I can do" to the man who passes
out overwhelmed by the whole onlooker experience.

Even male doctors, although hopefully more
knowledgeable about the mechanics, can no more relate
to the actual experience than the paperboy can.

And there is the problem. No matter how common or
universal human experience is, individual experience
is sometimes the bottom line.

When my son bangs his fingers with a hammer and says,
"Oh boy that hurt," and I'm making part of this up to
keep this a family friendly post, he means it hurts. No
doubt about it. No argument. However, when I refer to
childbirth, and say, "Oh boy that HURT," we are so not
talking about the same experience. And pointing out
the difference does not make me crazy or a liar,
although I may be guilty of common sense.

Which is why I just skip the "f" word. What profound
bone crushing fatigue means to me as a patient
medically diagnosed with a severe organic neurological
disorder is not even on the same planet as someone who
experiences fatigue as temporary tiredness. Having
experienced both, I know just how enormous the
difference.

No matter how knowledgeable and open to differences
another person may be, we all tend to "measure" other
people's experiences with our individual yardstick.
Sometimes the difference is hardly noticeable and
other times the gulf cannot be bridged even if you use
the same words.

The more self-absorbed the person, the less likely
they are to recognize that the rest of the world
doesn't revolve around them, their individual
experiences and their resulting opinion. My mama told
me opinions are like belly buttons everyone has one.

Just don't confuse your belly button with mine.

So when people ask me what I have I simply reply, "My
doctors have diagnosed me with a severe neurological
disorder." Almost no one ever replies, " Oh, I have a
severe neurological disorder too! Maybe I have what
you have."

Everyone experiences tiredness and fatigue, but
relatively few experience it as just one of many
severe components in the context of a complex organic
neurological disorder.

But if I'm silly enough to say I have "chronic fatigue
syndrome" I can hardly be surprised if someone gives
me the equally silly reply that they also experience
fatigue and probably have what I have.

Stop setting yourself, and the other person, up for
the inevitable communication failure. It's not fair to
anyone.

".....Theories that diseases [illnesses] are caused by mental
states...are always an index of how much is not understood about
the physical terrain of a disease....." Susan Sontag
- Fight for your opinions, but do not believe that they contain the whole truth, or the only truth. - Charles A. Dana
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xx Re: Fatigue - Why I never use the "f" wo
« Reply #1 on: Mar 11th, 2005, 10:35pm »

Thank you Tansy!! I needed this one tonight.

I think the "fatigue" part needs to be scrapped...you say chronic fatigue to someone and many seem to think if you go take a nap/rest, or drink a pot of coffee you'll be better. tongue I only wish it were that easy.
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xx Re: Fatigue - Why I never use the "f" wo
« Reply #2 on: Mar 13th, 2005, 05:28am »

What a great post thanks for sharing it.

Makes one think!

hugs
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xx Re: Fatigue - Why I never use the "f" wo
« Reply #3 on: Mar 14th, 2005, 11:52am »

Thanks Tansy...........great post!
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xx Re: Fatigue - Why I never use the "f" wo
« Reply #4 on: Mar 16th, 2005, 09:24am »

This is so good I wanted to keep it ........ so off to the archives with it!
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