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When someone is chronically ill it can be hard to know what to say to convey your concern and sympathy. Here's a few things you shouldn't say.
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 occurred 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. The person speaking these words isn't interested in us.They don't want to be inconvenienced by even acknowledging that we might be suffering. So they just tell us, we're not.
6) "My friend had that but they weren't sick this long."
This astonishing comment pits us against another person who was sick and ... we lose. Draw your own conclusions as to why you shouldn't say this to someone with CFS. Or any chronic disease.
7) "You sure you're not just doing this for the attention?"
Somebody said this to me once, laughing so as to make it seem like a ... joke?
Would this seem funny to you? It wasn't to me. My response after the first jolt, was to say, "Attention? What attention? I've never gotten less attention in my life."
8) "If you prayed more you wouldn't be sick."
This one is a double-whammy. Not only is there no milk of human kindness being expressed over the fact that we're sick. We're also unspiritual, or selfish, or ungodly.
9) "If you really wanted to get better ..."
Now our intentions are suspect. And, we're stupid too.
Who wouldn't want to get better? Who wouldn't prefer to be healthy and clear-headed, without vertigo or brain-fog? What reason could we possibly have to want to stay sick? Because we like our skinny income, sliced to a fraction of its former self? We like being ignored? Or lonely? Or frightened about what the future holds?
We'd have to have a major screw loose not to want to get better. And we don't have a screw loose. We're sick.
10) Nothing.
Whatever else you do, do not say nothing.
Respond.
Many of us have limited contact with the rest of the world. Some of that contact, as you've seen in my nine earlier points, leaves much to be desired.
Do not change the subject when we refer to our illness. Do not swing around to what you had for lunch, or where you went for your vacation. Something important is on the table. Don't just leave it lying there. An astonishing majority of people do.
You may be the only person this chronic one has spoken with all day, maybe all week. Maybe longer. You have a chance to make a difference for them.
Please. Make it count.
Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment30 Comments
Thanks you for this article! Our culture has a horrible tradition of blaming the victim. Too many people expect a quick fix for everything, and if they don't see it, they assume you must be doing something wrong. Patient empowerment means that we can take action to help ourselves; it does not mean that long-term illnesses are our fault!
November 4, 2009 - 10:13amThis Comment
i get constant re-curring fevers, headaches, and throat infections from my CFS, people are always saying... "you're sick AGAIN?" well, yes. that's why it's called CHRONIC fatigue syndrome. uggggh. so frustrating. i have even lost a best friend because she thought that i wanted everyone to cater to me, but i really have CFS. 280 counts of Epstein Barr virus found in one of my blood test. it's just that people forget you have it cuz they think you look or seem normal. keep your heads up fellow sufferers. we won't give up!
November 2, 2009 - 9:00pmThis Comment
one comment that i hate is "why can't you just get a job again?".... it's not that we are lazy, just that our fatigue is so immobilizing sometimes
November 2, 2009 - 8:54pmThis Comment
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November 2, 2009 - 5:51pmThis Comment
Susanc,
Thanks for your comments.
I am sorry to hear about your clinical insomnia. My son also has CFS and one of his worst symptoms for well over a year was a messed up sleep / wake cycle. Eventually it "stabilized" if you can call it that -- became less erratic -- so that he had a 36 - 40 hour day. Not as bad as what you are dealing with, but it had a terrible effect on him. He tried melatonin, Valerian, Rescue Remedy, with varying temporary relief.
We were helpless to do anything about it until it began to turn itself around.
What you are living with is worse than what he was dealing with and I can only say you have my sympathy.
November 2, 2009 - 1:47pmThis Comment
Jody,
What a thoughtful, smart list.
What startled me is that even though I think of myself as a sensitive person in regards to language, I could actually imagine myself saying a couple of your first ones. And as I thought through why, I realized that it's hard to know WHAT to say.
In telling someone else that I too have been exhausted, perhaps I meant to show some way in which "I identify with you," hoping to make you feel not so all alone. Instead, the opposite would be true.
In telling someone that they are looking good, perhaps I would mean to lift their spirits. Instead I would be negating their experience.
In telling someone else that maybe exercise would help, perhaps I would mean that "it helped me when I was ill, so i will share." Instead, I would be showing how little I knew about CFS.
I really love your list. It will definitely make me more conscious of how what I mean to say is not necessarily how someone else will hear it.
November 2, 2009 - 8:14amThis Comment
Diane,
I am so glad you posted these comments.
It is tricky talking about this subject, because unfortunately the conscientious folks out there, who are already trying to understand and offer support, so often are the ones who will read and wonder if they've seen themselves in this list.
Diane, this is for you personally and also for every other sweet soul out there who is wondering if they have discouraged a sick person where they meant to encourage.
You said about me somewhere else, that I was just not the sort of person to be trying to lay blame, or discourage. That you knew enough about me to know that my goal was an honorable one, and meant to be a positive one. And I know this same thing about you.
This article could probably use a companion piece about metacommunications, the non-verbal signs of disinterest and rejection. Because that is really ultimately what this article is talking about, the signs of disinterest and rejection -- which will often come out in these 10 ways, and more.
But Diane, and all other sensitive exhorters out there, you could say some of those things on the list and I would know you were doing it out of consideration and concern. And that would make all the difference in the world. I would know that I could explain to you about whatever your misunderstandings might be, and you would want to know. You would care. You would do your best to tweak your responses to best fit the need.
I know that about you.
And, really, the worst thing is to say nothing. I'd rather have someone like you say something else from this list and you and I have a discussion about it, than for you to be afraid to take the chance and not respond at all.
The words ultimately aren't the important thing. It is the caring response that matters. You would always bring that to the table Diane. And so would those other kind-hearted compassionate readers who so would like to help the vulnerable chronically ill.
I can't thank you enough for your comments, Diane. I think it is so important that this be brought to light.
November 2, 2009 - 10:06amThis Comment
Thanks for the wonderful comment. It made me smile and feel warmly understood. And it's wonderful to know, for sure, that the worst thing is to say nothing.
Diane
November 4, 2009 - 9:03amThis Comment
Excellent point.
I can see your perspective on this. So, I guess from either side of the religious fence, then, Remark #8 would be considered offensive.
I think the motivation behind such a remark is to offer disapproval and condemnation, in one way or another. Apparently it would offend those who believe in God, and those who are atheists, alike. An all-purpose insult.
October 30, 2009 - 2:13pmThis Comment
Great article. I would add, though, that some of us CFSers are "ungodly." As an atheist I have my own reasons for being offended by the implication that prayer would heal me. For more on a skeptical (and geeky) perspective on living with CFS, my blog is at http://newly-nerfed.net.
October 30, 2009 - 1:44pmThis Comment