• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article: Chronic Fatigue Sydrome: 10 Things People Misunderstand About This "Fatigue"

Jody, This article nails it. May I have permission to copy and tuck inside the notecards I write to out of state relatives and friends? I'd include your name and website.

Thanks for the wonderfully written explanations of our "fatigue."
 
Jody- I am fairly new to this forum but have been ill for 6 years...

I have never been able to describe to friends, family, doctors, co-workers what the fatigue feels like to me. It is so difficult unless you have actually lived through it.

I am printing your article and giving it to all those people who think I am just "tired" all the time. I know my doctor tries to understand but when 80 percent of his patients complain of fatigue then you just get thrown in with the rest of them.

I wish I could have put into words what you just did and I hope that when people read this they might understand it a little better...Thank you so much.
 
Hi soxfan,

Feel free to share the article with anyone you want.

The cheapshot that is this lousy name they've hung on us continues to cause misunderstanding doesn't it. It continues to denigrate and make light of what we go through.

So we'll continue to correct the misunderstanding, every way we can, every chance we get.

Go for it.:Retro smile:
 
This piece of writing has put all my feelings into words -it is fantastic. "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."- how I love that description. People think I am tired and compare it to how they feel after a long walk or an afternoon gardening. How I would love to feel like that. I have three persian cats who curl up all day on the sofa totally at peace with themselves. The sicker I get the more adrenaline races through me and I am wired. My dreams are vivid and in colour- that's if I get to sleep at all as most nights there is insomnia, night sweats, racing heart and all manner of wierd muscle twitching that goes on. I wish people could see how sick we are instead of thinking we are simple tired - if only!
 
Machair,

I almost didn't put in that bit about the kitten and the juggernaut. Almost didn't write it down and then later almost edited it out. I guess I just thought I was stating the obvious.

Actually the whole article almost never got posted, for that reason. But I guess, just because this is all so depressingly obvious to us doesn't mean it is to those around us. And I guess that is really the point.

This is what seems to get lost in the space between our reality and theirs. And we need to keep saying it until we hit on the thing that will make it clear for them.

Okay. I'll just keep repeating myself in as many different ways as I can. My family will assure you that I excel at this.:Retro tongue: