Isolation and Chronic Fatigue Syndrome : If a Tree Falls in a Forest ...

Mr. B
Very powerful words. They resonated in my soul and I got misty eyed.

Thank you, Jody.

Thank you for responding. :-)

To the chronically ill, getting a response is especially important.

Jody

This is so wonderfully written. You are definitely having an effect!

Deb :)

Thanks.

After living in that isolation for so long, that is gratifying to hear. :-)

Jody

``

Really beautiful expressed.

I use your article for my free email bulletin.
(but without the normally HTML)

Thank you so much.

~jan van roijen

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WOE betide the ones, who created on purpose
and for financial profit, so much loneliness and
unbearable grieve.

One day they will be punished for their
manipulations.

~jan van Roijen

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empowHER

WOMEN's HEALTH ONLINE

Isolation and Chronic Fatigue Syndrome:
If a Tree Falls in a Forest ...

Written by Jody Smith
on May 24, 2009 - 9:26am

If a tree falls in a forest, and no one hears it...
does it make a sound?

To the chronically ill, this is more than just a
philosophical question.

We are people living out of the loop and our
connection to the rest of the world can be tenuous.
Some of us have more of a social network and some
of us have less.

Some people with a chronic illness are very much
alone.

Most people don't want to hear the long descriptions
of symptoms, the loneliness, the feelings of isolation
and alienation. They don't want to be the sounding
board for the person who feels they've lost any
normal semblance of having a "witness" to their life
and existence.

The invalid is very self-absorbed. They have to be. It
is a full-time job rebuilding their life and they can't
afford NOT to be very, very focused upon this. And
they will repeat, and repeat and repeat the things
that they need someone to hear.

When the sick one has a revelation, and no one
wants to hear it, they are lessened. Their sense of
self, of their place in this world, becomes
precarious.

I remember being told by a well-meaning friend a
few years ago, that I should not think that my value
as a person was any less now that I was not able to
"produce".

But she was wrong.

Should my value be less? Should my life be less
significant than the life of someone who is healthy
and productive, connected to others through
activities, who makes an impact on the world and
other people? No, of course not. But it is less. I
started out believing otherwise but over the last four
years, I have had it pounded home to me.

In a family gathering, the sick kid may be in the
background, on the outskirts. He is the least able to
draw attention to himself, because he is weak and
easily tired. And he has, really, very little to say. He
has no stories about school or work to tell. He has
no achievements to share and be praised for.

His biggest achievement lies in the fact that he
managed to get out of bed and dressed, and now
is curled up in a corner of the couch, while the
people around him share their normal life.

Lucky is the sick person who has a champion in their
corner. And that champion is likely carrying a heavy
load. Because the sick one has a great need to be
heard. To be affirmed and acknowledged. To talk
about their symptoms, their fears and their hopes.

They fear that, like the vampire, they have no
reflection. They do not have an effect on the world
around them. They throw a pebble into the pool and
the ripples are so insubstantial that ... they fear that
they may be disappearing. And that they may
disappear without anyone even noticing.

That's why I'm here. Because I fell, a long time ago,
and I want to be heard.

Can I get a witness?

http://www.ncubator.ca

~~~~~~

A wonderful piece, Jody. Thank you.

I'm a 60 yr old man who's had CFS (for lack of a better name) for 10 years now. My wife is my hero. She is not only endlessly supportive, patient,and loving, but her ability to function and have an organized life gives me structure that, without it, I would have deteriorated to near complete dysfunction long ago.

I fear for suffers who lack my emotional and financial support.

Your's are some of the most meaningful pieces on the Web about the experience of CFS.

Keep writing!

Clint

Thanks Clint.

I have a hero too. My husband has held the household together, held the family together, held me together, for years. I have had the "luxury" of being able to go to bed when things are too much for me, when I'm not feeling well.

He has taken on the motto, whether he knows it or not, "The buck stops here."

He himself has fibromyalgia and has not been well for a very long time but he stands firm in spite of it. And he is my shelter which I have needed so much.

I write because apparently I have to.

The words have to come out somewhere and my family has heard 'em all. :-) And other people haven't been interested.

The reception I have found on the net is wonderful, unexpected, and something I'm really not used to anymore.

Your words mean alot to me.

Jody

Jody, there's no way to tell you the connection you build with an isolated person when you write so perfectly about their experience.

Only by having walked miles in those isolated shoes could you even know, much less write with such sensitivity, the emotions relating to simply being out of the loop.

If the outside world can go on without us, if newspapers are delivered and children attend school and jobs continue, if traffic swells, if the tv drones on, if people have successful careers, if all those things go on without us, we do feel insignificant. There's no way around us. If we met our steepest challenge of the day -- and yet it was a solitary action -- no one knows. And if our challenge was simply to get THROUGH the day, it may even seem to us that high-functioning people are some sort of alien tribe.

Keep up the great work. It's needed and wanted, and is quickly finding its audience.

Hi Diane

You said, "If we met our steepest challenge of the day -- and yet it was a solitary action -- no one knows."

This is maybe the aspect that kills me the most. And I am not even totally alone, I have a family who cares about me. I can't imagine what that is like for chronic people who are living alone. It makes my blood run cold.

Have you also been, or are you, chronically ill? You certainly sound like you have the inside track, yourself.

I've been astonished by the response I've gotten to this article, here on EmpowHer, and on my own website, Ncubator. What I keep hearing, is, yes, this is how we feel; this is what it's like for us.

I was making dinner one night when the first line of this article appeared in my head. It's something I heard years ago, an old proverb, or beginning of an old joke, I can't remember which, that's how long ago.

And I realized, that is what I am going through right now. This sentence is the perfect analogy for what I am going through. And as I made dinner it began writing itself in my head.

It didn't get written down for months. But when I started writing for EmpowHer, and opened my own site, that gave me the extra push to write it down. And, I just wrote how I felt. What it was like for me.

Awesome to get the response, to find that so many other people feel the same.

Thanks, Diane.

Jody, I am not chronically ill, but I suffered through a pretty tough depression for a couple of years that left me almost unable to do or accomplish anything.

With therapy and medicine, I too worked my way out. But the impressions I made and the things I learned during that time haven't gone away. I never stopped seeing myself through critical eyes -- for instance, what was I doing in the grocery store in the middle of the day without a baby in the cart? (Meaning, unless you're working, you're worthless.)

I fell into this depression after the end of a successful 22-year career, so I was used to being a high-functioning person. During the depression, I found myself disbelieving how many things I used to be able to accomplish just in one day.

Chronic illness is as debilitating mentally as much as it is physically -- and maybe even moreso. I remember a day when I was driving in the car and something on the radio made me laugh. Genuinely laugh. And then immediately I stopped -- because i realized that even laughter itself seemed difficult. It had been so long since I had genuinely laughed that I had nearly forgotten how. I had forgotten what wellbeing feels like.

I have a great husband, who never forgot who I was at my best even when I was at my worst, and fabulous friends, who always kept a place for me right by their side. Without such support, I'm not sure how a person works their way out of a rough spot. But I do know that the internet makes connections when there seemingly are none, and helps people feel less alone even when they are. And I think that's why your writing stands out.