Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome
1. "I get tired too."
The ridiculous moniker hung long ago upon this debilitating disease continues to throttle us. "Chronic Fatigue Syndrome". Its name is all about being tired.
Everyone and his dog is tired. Take an unofficial impromptu poll anywhere. People can hardly keep going. I remember what that was like. Quite fondly, actually. That was when I could keep going. Wanted to do it. Did do it. Gloried in it. And now it is beyond me.
We are more than tired. This goes way beyond fatigue. Beyond exhaustion. Somewhere past the town limits of depletion. Just short, it seems, of annihilation.
2. "You don't look sick."
This one used to really bother me. Till it occured to me that maybe it would be worse if I looked as bad as I felt. Didn't want THAT peering back at me from the mirror.
But to be told I looked fine seems somehow to negate my experience. A casual glance and a wave of the "Fine" magic wand, and Jody's chronic condition was shuffled and put aside.
3. "If you'd just get some exercise ..."
Here, I'll finish this sentence for you – I could drop on my face for a month and a half. For many with CFS this is the truth of the matter. I've been in that group for long stretches. I'm just now coming out of one of those stretches again. Hopefully as I continue to improve, I'll be able to do more.
Some can exercise if they stay within their limits. Some can't. The point is, exercise won't cure CFS. And if it's done wrong, it can make it much worse.
4. "This is obviously depression."
Some people with CFS experience relief from low-dose antidepressants. That's good. But what we're suffering from isn't depression. If that were the case, and if antidepressants would fix this, I'd be happy to say so. But CFS is not depression. And there are too many symptoms that this would not address.
We know what we grapple with on a daily basis. It isn't depression. It's a multi-system melt-down.
5. "It can't be that bad."
This is so demeaning. So trivializing. So obviously a way of brushing aside our condition.
We value and respect the experiences of all of our HERWriters, 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.
Add a Comment31 Comments
Great article, I am going to post a link to it on my chronic fatigue site:
www.mahalo.com/chronic-fatigue-syndrome
Luke
October 29, 2009 - 1:17pmThis Comment
Thanks Luke.
Glad you liked it.
October 29, 2009 - 1:53pmI always thought this was an interesting condition. I have depression and am always exhausted, though obviously there is a difference between CFS and depression. I'm pretty sure the reason why I'm always tired is due to insomnia and just not getting enough sleep and having a weird sleeping schedule. At least this is mostly preventable, whereas CFS is much more complicated than that. I'll be sure to keep this list in mind.
October 29, 2009 - 2:50pmThanks Rheyanne.
You are very thoughtful. Speaking for those with CFS, we appreciate that.
October 29, 2009 - 2:55pmThanks Jody. Your articles are insightful and funny and poignant. Keep up the good work!
October 29, 2009 - 4:50pmKelly
Thanks Kelly.
I'll do my best.
October 29, 2009 - 5:06pmMy husband has had CFS for thirteen years and we have heard all of these, at one time or another. Here's one you don't have: (from his brother) I wish I could get it; I could do with six months off.
Excellent article. I hope you are on the way up. It is a dreadful illness.
October 30, 2009 - 2:55amSorry, I forgot to add my details: http://thelaughinghousewife.wordpress.com
I write about family life but my husband's health often comes into it.
October 30, 2009 - 2:57amThanks for the addition. I suspect we could come up with another ten without any problem. Unfortunately.
I am on the way up, I have regained some pieces of my life in the last year or so and am hoping the trend continues. I hope your husband recovers his life.
October 30, 2009 - 2:05pmLaughed when I saw this....sad as it is but family are sometimes worse than strangers with the weird and wonderful comments/solutions to the condition...I'm really lucky to have a very very supportive husband, who although he admits he doesn't always understand the illness and has come out with some real clangers himself at times, he's completely there for me at all times...so important to have that..even if it is only one person!
March 17, 2011 - 7:30am