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Fatigue vs. Weakness

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CB

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Jun 25, 2009, 6:19:34 AM6/25/09
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I have several close friends who have chronic illnesses like me, but
each of us with different causes. One unifying factor is overwhelming
fatigue.

I've discovered that language makes a big difference in perception
here. Healthy people experience fatigue. Generally, they can still
push themselves to function even though they are fatigued. When they
hear the word "fatigue" they associate it with what they experience and
when someone says they are disabled due to extreme fatigue, they
automatically think "lazy". Then, when they hear protests that one is
"ill" with associated "fatigue" they think "hypochondriac". So,
"Chronic Fatigue Syndrome" = "A Lazy Hypochondriac" in their minds.

The word "weakness" more aptly describes what I experience. Much of the
time, there is no way I can leave the house, and often there is no way I
can even get out of bed. It is not an option to "push myself" to do
these things. I am physically unable. Sometimes I even lie in bed with
a bladder about to split because I can't even make it into the
bathroom. This is weakness, not just fatigue. This disorder would be
more appropriately named "Chronic Weakness Syndrome". When I tell
people that I am very "weak" instead of very "fatigued" they get it, and
make allowances for my illness that they don't make if I call it "fatigue".

Cathy

--
Medical technology is of no value without good doctors.
La techologia no vale nada sin medicos buenos.

Mandi Smallhorne

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Jun 25, 2009, 6:30:02 AM6/25/09
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Gosh, I couldn't agree with you more, Cathy! I am so lucky in that I just
have the chronic pain now (which is fatiguing in itself, but more in the
ordinary way) and no longer have that 'I can't get anything to begin to
move' fatigue. It took ages for me to get my husband to understand what that
word 'fatigue' actually meant, and I think my mom still secretly believes I
was malingering. When I look back now and think about how I pushed myself to
work - and refused to let on to clients, working at night or whenever I
could - I can't believe I did that for so long! A different word would make
a huge difference, I think, because, as you say, they think it's just
ordinary tiredness. Also, I don't think they truly understand what 'chronic'
means. 'Continuous' or 'persistent' might be better - people can accept that
you're hugely tired, but they don't seem to grasp that you can't just 'have
a good rest' and get over it.
Mandi

Cathy

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Kim Abbey

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Jun 25, 2009, 4:03:08 PM6/25/09
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I'm sooooo glad to hear others talk about this.� I pretty much refuse to tell anyone I have "chronic fatigue syndrome" for the very reason that it DOES come across to people as "lazy hypochondriac."� CFS is the such a stupid name for this disabling condition -- if pressed I will likely say that I have some "health challenges" and refuse to elaborate.�

Truthfully, if I hadn't experienced this, I doubt that I would understand either.� So while I avoid talking about it, I also try to avoid judging people who would like to judge me.� Ah life... so convoluted at times.
Kim

Life is not about waiting for the storms to pass...it's about
�learning to dance in the rain.


--- On Thu, 6/25/09, Mandi Smallhorne <mandi...@ICON.CO.ZA> wrote:

Maija Haavisto

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Jun 26, 2009, 2:28:31 AM6/26/09
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> I'm sooooo glad to hear others talk about this.� I pretty much
> refuse to tell anyone I have "chronic fatigue syndrome" for the
> very reason that it DOES come across to people as "lazy
> hypochondriac."� CFS is the such a stupid name for this disabling
> condition -- if pressed I will likely say that I have some "health
> challenges" and refuse to elaborate.�
>
> Truthfully, if I hadn't experienced this, I doubt that I would
> understand either.� So while I avoid talking about it, I also try
> to avoid judging people who would like to judge me.� Ah life... so
> convoluted at times.
> Kim

Have you tried telling people you have myalgic encephalomyelitis instead? Not only is it more medically accurate but even if the person can't really figure out what it means, it's clear it's something pretty bad and not just "laziness".

In Finnish the problem with the name CFS is even worse, because we don't really have a word for fatigue so the Finnish name translates to "chronic tiredness syndrome". At best people assume it's a sleep disorder or something like narcolepsy (I've even had a neurologist who just couldn't grasp the difference between my fatigue and "sleepiness"), at worst (and most of the time) - well, you can probably guess.

--
%. _ /) That's why I didn't kill myself sooner, the pressure
`%-('`._/ ) _ of spelling mistakes. -"5 Suicide Notes" by Saracen Tate
`\ \ `'/ Maija Haavisto * DiamonDie@IRCnet * http://www.fiikus.net
`.___.'mh My CFS/ME/FM book: http://www.brokenmarionettebook.com


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Kim Abbey

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Jun 26, 2009, 1:50:41 PM6/26/09
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myalgic encephalomyelitis��� Yes,
I actually have told a few people this.� But I have to remember how to
say it in order to tell them.� So I ONLY� use it when the fog is
light.�


Life is not about waiting for the storms to pass...it's about
�learning to dance in the rain.


--- On Fri, 6/26/09, Maija Haavisto <ma...@WRITEME.COM> wrote:

From: Maija Haavisto <ma...@WRITEME.COM>
Subject: Re: [CFS-L] Fatigue vs. Weakness
To: CF...@LISTSERV.ICORS.ORG

CB

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Jun 26, 2009, 7:47:13 PM6/26/09
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Kim Abbey wrote:
> Truthfully, if I hadn't experienced this, I doubt that I would understand either. So while I avoid talking about it, I also try to avoid judging people who would like to judge me. Ah life... so convoluted at times.
> Kim
>
Having been grossly discriminated against for so many years, judging
people who judge me is one of the biggest things I struggle with. Don't
have a handle at all on that one.

> Life is not about waiting for the storms to pass...it's about
> learning to dance in the rain.
>
>
Love your sig!
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