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

By HERWriter
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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.

Add a Comment25 Comments

thank you for articulating with such clarity some of the challenges facing those with CFS. i AM one of the chronic ones who live alone... and i can say honestly at times it is excrutiating. one gets very, very skilled at managing energy; making prioritising decisions; and inventing new ways to self-entertain.

there is a wonderful book called The Healing Wisdom of Africa, by Malidoma Patrice Some. he writes evocatively of the importance of community in healing; and it grieves me to recognise we live in a culture that does not create inclusive structures for those with CFS. there is much change needed.

keep writing; telling the story; being defiant; subversive; and truth-telling. our narratives need to be added to the collective story, woven in integrally with our culture, made visible to those around us.

March 22, 2010 - 8:36pm
HERWriter Guide (reply to pippi)

Hi Pippi - Thank you for writing, and for recommending the book about community in healing. That really is the whole idea behind EmpowHER, to bring together a community that will support women in empowering themselves for their own best health. It's good to have you with us, and we look forward to hearing more from you.
Take good care, Pat

March 23, 2010 - 6:32pm
EmpowHER Guest

Wow - I can so relate to this (and to the other things that you have written re CFS)....the feeling of "disappearing without anyone noticing" is where I am rt now - reading this made me cry, but I am glad that you wrote it. Thank you for writing!

December 18, 2009 - 10:12pm
HERWriter (reply to Anonymous)

Hi Tammie,

I sympathize. It's a terrible way to feel. I spent alot of time there myself.

I can only encourage you to hang in there, and hope for something more, something better to come into your life. I really had gotten to the point where I didn't believe my life would or could be any different. But things have changed for me, and if that can happen for me it can happen for you.

Thank you for telling me how you feel.


December 18, 2009 - 10:28pm

No, it's not the same.

There's nothing quite like actually being with someone you want to spend some time with. Not just for the deep stuff either as important as that is. But even the small interactions people take for granted -- till they don't happen anymore.

Small talk at the grocery store, joshing around with the people in the bank, or anywhere that is (for us, used to be) part of your every day life.

People you might drop in on or that might drop in on you. Maybe have them over for a cup of coffee or a meal. I miss all that so much. Just try and remind yourself, it's not over yet. We're not done yet. While there's life, there's hope that something better can happen. And you can have people in your life again.

I am really glad you wrote here. I hope you write again if you feel so inclined.

November 25, 2009 - 11:36am

I understand what you mean about the isolation. I am lucky to have my family around me. Even so over the years being cut off from and cut out by my community has been very painful and didn't get easier to take over time, if anything it got harder.

I have found quite a bit of relief and ... a new sense of community since going online last spring. It is a virtual world here on the net but it can be a satisfying one, and can help to fill some of that void.

Have you thought about joining a forum, or maybe Facebook? There are CFS forums where there is no explanation necessary when you're having a messed up day, they are all in the same boat as you.

I empathize with you about the isolation. I know it is a hard burden to live with.

November 25, 2009 - 10:42am
EmpowHER Guest
Anonymous (reply to Jody Smith)

Yes I'm on Facebook and am a member of a couple of other ME/CFS websites. It helps but it's not quite the same. Thank you for suggesting though.

November 25, 2009 - 10:58am
EmpowHER Guest

I think if anything kills me it will be the iosolation. I have been ill for 3.5 years and go for days and weeks without seeing a single person. I know visiting a chronically ill person is a drag so I don't expect anyone to come over anymore.

November 25, 2009 - 10:26am

I am touched by your comments.

And I am glad that I've helped your voice be heard.

Thank you.

October 1, 2009 - 8:02pm
EmpowHER Guest

Exaclty. Well worded. I can't word things I feel or experiecne so I am so glad you did. It won't change things for me but it's so nice to hear my feelings, my expeiences so well articulated for me.

October 1, 2009 - 7:33pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

Chronic Fatigue Syndrome

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