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Chronic Fatigue Syndrome: 10 Things People Misunderstand About This Fatigue

By HERWriter
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Chronic Fatigue Syndrome related image Photo: ThinkStock

I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is exceedingly misleading to the casual observer.

Here are ten things that are often misunderstood about the "fatigue" of Chronic Fatigue Syndrome.

1) This Fatigue is not the same as tired.

I'm not tired. I run out of energy, but it doesn't make me drowsy. It floods my nervous system with static and it makes me bump into things. It distorts my vision, erases my memory and renders me incapable of speech or understanding, but it doesn't make me tired.

Tired is a sweet curled-up kitten by the fireplace. CFS "fatigue" is a juggernaut dragging me in a free-fall through empty space, while everything I love goes to smash.

2) This Fatigue is not the same as lack of energy.

When CFS "fatigue" hits, it can leave me unable to get up off my face. I may not be able to stand up for more than a minute or two before feeling like I'll fall down.

Then it's time to find a flat surface like a bed and become limp while trying to get enough air, and maybe make the shaking stop.

3) This Fatigue is not the same as sleepy.

For years, when I was my sickest, I never got sleepy though I had to sleep most of the day. Instead, I knew it was time to go to bed because I was vibrating.

My face was numb. My hands and fingers were too clunky to operate. My arms, hands and face tingled and burned. I couldn't fathom what anyone said, and couldn't think a thought to completion.

4) This Fatigue is not the same as depressed.

When I was very ill, I spent far more time angry and frustrated than I ever did depressed. Because I WANTED to do things. I wanted to see people and be involved in life outside my bedroom.

But I couldn't. Because CFS "fatigue" had stolen my ability to move, think, and communicate.

5) This Fatigue is not the same as exhausted.

We're going way beyond the normal experience of exhaustion here. CFS "fatigue" makes breathing a full-time job. It causes me to gasp for air, and it leaves me unable to lift my head. My strength is liquefied.

6) This Fatigue is not the same as lethargic.

Lethargy implies disinterest. But we have a powerful desire for life, we just have no ability -- physically or mentally -- to do anything about it. Picture us in a body cast, and maybe you'll get the idea.

7) This Fatigue is not the same as unmotivated.

See, it's not the desire that's missing, it's the ability to make our bodies do our bidding. Our brains may be too dysfunctional to even be able to think about what we want but at all times we do know that we want -- OUT!!!

8) This Fatigue is not the same as ... fatigued.

CFS "fatigue" is a multi-system breakdown, affecting the nervous system, the endocrine system, the immune system, the digestive system and the cardiovascular system. There are more but that sentence is already too long, and I'm sure I'm losing people.

Suffice it to say, systems are not working right, and they are bumping into other systems that normally they should flow seamlessly with.

9) This Fatigue does not pass after a few days' rest.

Think back to the last time you were recuperating from a severe case of the flu. Now, try to imagine that lingering sickness, that time of no-life, stretching from a few weeks to months. And then, to years.

10) This Fatigue is the stuff of night terrors where you're trying to wake up and save yourself, but you can't.

This is no well-mannered "fatigue". The relentless force in this waking nightmare is destroying everything you hold dear, and all you can do is lie helplessly watching as your life shrinks. And maybe disappears altogether.

I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.

http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment20 Comments

EmpowHER Guest


I very much agree with Zarla's first comment. Though I've been wildly behind on reading your incredible work, it is more powerful for me than almost anything; because it IS what I live, and you are showing others the way only someone else who has "written it down" can do. Meaning, you know how it is when you show someone close to you something printed? Something said by another person? Somehow, it is often taken more seriously, then.

I just love what you have written here, and can't wait to share it.

I need to read up and be reminded as to how you have been healing yourself, too.

Hugs, hugs, my dear!;)

September 26, 2010 - 12:30pm
HERWriter (reply to Anonymous)

Hi Helene,

Thanks for the encouragement. I'll keep chronicling for the chronics, do what I can.

September 26, 2010 - 1:38pm
EmpowHER Guest

It's a long time since i read anything from you, I'm sorry for that because they're always so great! You say it like it is........again! Some years ago you were the first person online, to befriend and empathise with me. Even amid the concrete head I have, I remember your caring words.

I too blog now, but not as well as you!

I wonder how you are doing?
Thankyou and take care Jody

Zarla xx

September 22, 2010 - 12:43am
HERWriter (reply to Anonymous)

Hi Zarla,

It's nice to be remembered like that ... especially by a cfs brain! I know how it can be to be so isolated and so affected by the touch of another person who understands. Been there myself.

I think that's why I started writing, you know? Because I knew what it's like to be alone like that. I didn't want anyone else to ever have to be that alone with this illness.

Nice blog, I took a quick look at it. I'll go back later and take a longer look.

I am doing remarkably well. Most of the summer I have had the best energy and mental clarity I've had in years. Even rode a bike, a sure indicator that my nemesis of a decade, vertigo, has diminished considerably. Usually by mid-September I'm dealing with a cfs slump (sometimes a crash) but so far, no signs of such a thing.

So I would venture to say ... I am getting better. Thanks for asking.

I hope you will also heal, and regain your life.

I appreciate that you wrote, I know how much energy that burns up.

September 22, 2010 - 4:28am
EmpowHER Guest
Anonymous (reply to Jody Smith)

Hey, thankyou for visiting the blog, I'm honoured!
Great that you have been having a good summer, nothing like some good days all strung together to really pep you up!

Take care Jody,
Zarla xxx

September 22, 2010 - 6:14am
EmpowHER Guest

Ooops. I mistyped. The website I'd be posting it to is www.lannieinthelymelight.blogspot.com. Thanks! Lannie

September 22, 2010 - 12:22am
HERWriter (reply to Anonymous)


I think that would be just fine.

And thank you.

September 22, 2010 - 4:18am
EmpowHER Guest

Wow, this hits it on the head! Well done. Would you mind if I reprinted this on my blog www.lannieinthelymelight.com? Of course, sourcing you and providing a link back to your site...

September 22, 2010 - 12:21am
EmpowHER Guest

An excellent post - I'm printing a copy to hand to colleagues, friends and family.

September 21, 2010 - 1:50pm
HERWriter (reply to Anonymous)

I'm touched.

I hope it makes a difference.

September 21, 2010 - 2:06pm
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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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