Mental Health

Get Email Updates

Mental Health Guide

Alison Beaver

Have a question? We're here to help. Ask the Community.

ASK

Health Newsletter

Receive the latest and greatest in women's health and wellness from EmpowHER - for free!

Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome

By Jody Smith HERWriter

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 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.

Add a Comment31 Comments

EmpowHER Guest
Anonymous

The same situation can apply to Rheumatoid Arthritis. I have had this condition for 18 years, with chronic fatigue being one of the symptoms, and most of my family have trouble believing that I am ill because I don't look sick. Pain often doesn't show especially when one does her best to smile and be friendly. It can be very lonely and frustrating having a chronic illness. Thank God for the special friends who "get it" and know how to respond and believe you!

March 20, 2011 - 3:57am
EmpowHER Guest
Anonymous

This is a great article, but why is it in the mental health section? Kind of undercuts some of the message.

March 18, 2011 - 8:32pm
Alison Beaver

This was a great article, and I had no idea about the depth of this illness (I still don't, but this article helped illustrate it to someone who does not have this condition).

Could you write an article about the Top 10 Things You SHOULD Say to Someone with CFS? What is helpful? I wrote an article for college students about how to help someone with an eating disorder, with some sample scripts of what would be helpful, that was to be used by someone who has little or no understanding of the disease. I think the same could be helpful for "How to Help Someone with CFS" that is meant to be read by family and friends.

Thank you!! I still don't understand this condition, and am curious to read more about how you do live day-to-day. I'm not sure if this is offensive to say (please tell me if it is, as I'm learning!), but as a mom of a newborn, I have been literally sleep-deprived for 10 weeks, and in tears more days-than-not out of sheer lack of sleep, the worry that this is never-ending, the fear of the heart-wrenching wails and cries from the newborn in the middle of the night. The tears are from pure exhaustion, not knowing how much more I can take There is a real physical pain from not sleeping. But, that is where the comparison stops, because I know that I am not dealing with a disease/condition, but with a newborn that I can escape from for a few minutes (unlike CFS), it is not chronic (although, when you are going through it minute-by-minute, it feels as though it is), and there are the rewards that the newborn gives back eventually. My comparison is only that I understand the sheer exhaustion and physical pain aspects of it, if only for a few weeks, and can not understand how you go about your day-to-day life? Sleep deprivation is severely debilitating, and then you say that CFS is not only about "not sleeping", but there are so many other symptoms.

Take care, and I look forward to learning more from you about CFS.

June 1, 2010 - 8:08pm
Jody Smith HERWriter (reply to Alison Beaver)

Alison,

Top 10 Things You Should Say To Someone with CFS is a good idea. I did a few around the Holiday Season that gave suggestions as to how to make the holidays easier for chronically ill people, types of gifts to buy (or not buy), offers to shop for people who can't; providing quiet rest havens to those who must take frequent breaks from gatherings; being in touch with people who are housebound, etc.

But I haven't written one on this. Thanks for the suggestion.

Not offensive at all, I appreciate your genuine efforts to comprehend this disease. The type of exhaustion you're talking about may be experienced by some of us, for me it happened during one part of my illness. But that has not been a major player for me for a long time.

Each of us has different symptoms it seems. As to mine, I find the neurological symptoms to be the worst. Suddenly my brain won't work right and I can't ... think. I lose thoughts and not in the normal way most people do. (I used to be that way myself and there is an enormous difference.)

Too much sensory stimulation at once sparks confusion and vertigo and a sense of being jumbled and fractured ... it may pass when the stimulation stops or it may take hours sometimes days or weeks to settle, depending on how sick one of us is.

I also experience an inner tremor, feel like my arms and hands are vibrating at times, and when I've been too active for too long my face may feel numb and tingling.

Vertigo and dizziness crop up and make navigating through a day more of a challenge than it really needs to be.

I do run out of gas sometimes but it is different from a normal tired, even a normal dead-tired. It is more like a battery just ... goes dead. Things stop.

Everything must stop, there is no choice, or I will end up on my face, panting for air, with white noise pounding in my head like the surf, chaotic messaging rioting in my nervous system, the room is spinning, I am spinning, and seasick. A feeling I can only describe as, that, my cells feel poisoned. It may be brief (in the last year or so, it usually is brief) or it may last for hours. Or longer. Much longer.

I tell ya, Alison, being tired is not even the tip of the iceberg for this disease.

I appreciate your asking these questions.

June 1, 2010 - 8:34pm
Jac_15

Thank you Jody for this article. Only someone who has suffered from this can understand the unimaginably hurtful things people say. I'm almost used to people saying "But I get tired too" or "We ALL get tired", but usually it's from people I've just met (when the inevitable "what do you do?" question comes up), but when someone you thought was a friend, a best friend even can turn around and say "we all get tired" that's one that really cuts. Even my own father has been known to almost compete with me, that he's 63, he must be much more tired than I am (because he has emphysema, through his own choice to smoke!). I've had this illness for 18 years, and it has robbed me of my teens, youth, and all the things young people should be able to do, good and bad! No one can understand how that feels, unless they've walked the same path.

Having said that people can be almost cruel in their comments, I have to say the ones (and they are few and far between) that understand almost make up for the ignorant comments the rest make!

I will be posting a link to this site onto my facebook page, so my friend can have a read.

June 1, 2010 - 7:09pm
Jody Smith HERWriter (reply to Jac_15)

Thanks for the link Jac_15.

And thanks for the understanding. Your experience has been my experience. And what we have gone through, is the common experience of so many of us.

Knowing we're not alone in it can help keep us going. It helps break down the sense of isolation that so often comes with being chronically ill. Especially with a disease that some people don't believe is a disease at all.

Thanks for writing Jac_15.

June 1, 2010 - 8:39pm
EmpowHER Guest
Anonymous

This artical was a welcome guide. It is so easy when ignorant to ignore people not taking into account the person's current experience and the difficulties that they are facing.

November 24, 2009 - 5:38am
Jody Smith HERWriter (reply to Anonymous)

Yes, that's true.

So we try to help them see the things that they can't see. Let's face it, this disease is hard enough for us chronics to comprehend at all. I have had more days than I can count when I am appalled and can hardly believe that life could derail and ditch me as it has, that I could be as helpless and debilitated as I was.

How much harder is it for the person who has not experienced it, to have any notion of what it's like, no matter how hard some good folk try.

So, we try to tell them the story with the hopes that it will broaden their understanding. Sometimes, it really does do that. The key is that we be able to tell our stories.

June 1, 2010 - 8:44pm
EmpowHER Guest
Anonymous

What a lot of people don't realise, is that when they see you 'out & about' & "looking normal" - they don't see you the other 99.9% of the time when you can't make it out the door : it is only because you are having a better-than-normal day that you are able to go out. What is an ordinary action to them, has taken a huge effort from us - & will take a lot of getting over, let alone summoning the energy to repeat it!
Thankyou for putting into print what a lot of us are hearing, & giving us a place to respond.

November 6, 2009 - 12:04pm
Jody Smith HERWriter (reply to Anonymous)

Yes,

You are absolutely right in this. They don't see us on the days we can't get out of bed. When we don't understand what people are saying and can't make our own sentences make sense.

We will get our stories out. And some people will hear and understand. That's the goal, eh?

June 1, 2010 - 8:41pm
Image CAPTCHA
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy

Improved

1547 Health

Changed

572 Lives

Saved

427 Lives
0 lives impacted in the last 24 hrs Learn More

Take Our Featured Health Poll

Have you experienced postpartum depression?:
View Results