"So you're really faking it?!"

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I just got back from going to a funeral out of town. I had to drive over an hour each way and spent the night with my friend whose son in law had died. It was very hard on me, but it was one of my best friends and goodness knows, I don't have too many of those left. I didn't go to the visitation the night I came in, I just slept while my friends went. The next morning I dressed and went to the memorial service, but did not go to the grave site service, and then just drove straight home.

I saw a lot of old friends there and many asked what I was doing. Very frustrating to have to answer. I used to be so vibrant and led meetings and was over women's groups there. Now I just mumbled something about living in another city. One person asked me "Do you still have that fatigue thing?" I answered "Chronic Fatigue Syndrome, yes" and she just blurted out "So you're really faking it, huh?" I was caught off guard. I suppose I could take it as a complement, that I didn't look that tired, and I did manage to drive up to the funeral. But it's so close to what people really think that I was at a loss for words. Of course, being so tired that I could hardly see and focus didn't help. I just mumbled some more about it being a very frustrating disease.

I said goodbye to a few friends on the way out, and tears were stinging my eyes as I got in my car. I have found that being in crowds is very hard for me. I'm not sure if it's stimulus overload, embarrassment that I can't keep up mentally as I used to, the feeling of inadequacy as I feel stigmatized with a weird disease.

I know everyone has had to encounter remarks like this. It will be a wonderful day when CFS will be called by another name and there is some understanding what it is.
 

Esther12

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I've got to admit, I was expecting worse with the title.

Sorry it was a strain, but hopefully you were able to offer some support to your friend.

The way CFS is treated certainly makes it harder to deal with.

edit: I'm going to add a note here, six months after posting, because I misunderstood the first post and this thread keeps being bumped. I clarified at the top of page two.
 

serenity

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what a terrible thing to say, i am really sorry. we hear so much of that kind of crap, it's really bizaar. why would anyone think we would fake something like this?
good for you for doing your best to go & be there for your friend.
you deserve praise, not stinging insensitive remarks.
 

Dreambirdie

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I never have good snappy comebacks in those situations, but I believe I would have told them to F off.
I like it! That would work for me. :Retro wink::Retro smile::Retro smile:

My snappy comeback line is: It looks like compassion is NOT your strong point. That usually raises their eyebrows.
 

zoe.a.m.

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Sorry jshu43; what an extra burden on top of everything else already going on. I think for most healthy people, they have so much action going on all of the time that they don't take what they say all that seriously, and, they don't tend to seek out periods of isolation wherein they have to get to know deeper aspects of themselves. In a way, we ask them to use their very weakest muscle.

I'm with you guys (Caledonia and Dreambirdie): F off is certainly one I think of and am working on the courage to throw it out there. I like "It looks like compassion is NOT your strong point" as well and may just practice that one so that it comes out automatically when it's needed.

Thinking about this, I've had several people (I usually wait to see how well I will get to know someone and then give it several months after that)--it's really just a few altogether--flat out call me a liar or manipulative or some variation. Some people are very ugly on the inside.
 

illsince1977

A shadow of my former self
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The only thing I could possibly add to the previously posted articulate responses is the person who accuses another (of faking, in this case) is the person who would actually do that thing themselves. Chalk it up to their lack of imagination!

I have no "good comeback" skills, but maybe one of you could word something snappy that incorporates that thought. I do like the "compassion is not your strong suit" one. Barring that, I'd go with the "f*** off" one.
 
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don't ever call it CFS again - this name was invested by psychiatrists in the 1980s to hide the seriousness of our illness

call it 'a neuro-immune/neurological illness'

or myalgic encephalomyelitis

or non-paralytic polio


(sometimes I just give up on the whole contemptuous attitude thing & tell people I have MS)
 

Esther12

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Did I miss something here?

re "I suppose I could take it as a complement, that I didn't look that tired, and I did manage to drive up to the funeral."

I thought it was meant as a complement... that you were 'faking' the appearance of looking well and getting by at the funeral okay. I think we often try to fake it a bit in social situations, and appear better than we are. Otherwise it's barely cogent.

Q: Do you still have that fatigue thing?
A: Chronic Fatigue Syndrome, yes
Q: So you're really faking it then?

Surely the second question, if taken to mean CFS cannot really be 'had' by someone, is contradicted by the premises of the first?

In situations like this I find a good comeback is 'What do you mean?' - we can be a bit sensetive about people being dismissive of CFS, and often there is some misunderstanding there. If not, and they're really just being an arse, getting them to clarify what they mean can be a more effective way of mocking them than any cutting remark.
 

muffin

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Sorry you had to go through this. It is infuriating and it does cause us to cry out of shear frustration. My nutjob neighbor still thinks I am "not sick" even though she has called dozens of times only to have my husband answer and SHE says to him, "She's sleeping, right?" - Now, if I were not sick would I be sleeping for hours in the afternoon? Would I only leave the house once to maybe three times a week?
She actually called me about three weeks ago and tore into me that I and my husband never invite her and her husband out for dinner?!!! She attacked me for not calling her on the phone! She's mentally ill and I know that but come on, if you know someone is sleeping most of the day/night what are they faking? Why would anyone FAKE this stuff? More than that - how could anyone fake this stuff for 16 years, every single day, day in-day out? HOW? WHY?

ignore the stupid comments. Or do what Min does and call the disease something else and NOT CFS. That works pretty well too.
 

helen41

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I'm with Min. I hate, hate, hate the term Chronic Fatigue Syndrome. CFS is not a description of a disease, it's description of a syndrome. I tell people I have an illness that causes fatigue. If they persist I say the proper term for it is myalgic encephalomyelitis and it is related to a virus.

I like your answer, Esther. Sweetly asking them to clarify will either take the sting out or expose them as a colossal idiot to eveyone in earshot!
 

LaurelW

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You know what I'd really like in situations like this....is a one-page pamphlet to keep in my purse that succinctly but thoroughly lays out what this illness is all about, symptoms, possible causes, the fact that there's no cure, portrays how badly disabled people can be, explains about the stupid name. etc. so that I can help educate people. I've never seen such a pamphlet, so if anybody knows where I can get one, or has an educational blurb that I can print out, I would appreciate it very much. Sometimes I give people a quick rundown, but can't rely on doing that because of severe brainfog, plus it's easier to just reach for something when caught off guard. Then I would feel like we would both come out winners. Ideas?
 
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Yeah very sucky name. I think "syndrome" itself sounds fake. I mean, I know what it's like to be not believed. Just saying, that word is terrible. Like if someone said, oh I have "itchy skin syndrome" or "memory loss syndrome", it does sound psychiatric or psychosomatic.

On the bright side (okay, it's not that bright) occasionally I like that people assume it's a minor thing. They think it's "just" me needing more sleep because of being a depressed person, or feeling bad because of allergies. Occasionally I am glad it's "invisible", such as in a social situation.
 

leela

Slow But Hopeful
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Of course tone and body language add so much, but I'll just add, for hopefulness' sake, that since the inquirer asked just before if you still had "fatigue"
(grr), my read was that she was indeed trying to give you a thumbs-up on your ability to get yourself to the sad event and mill around like a "normal" person. I'd hope that what she meant, anyway....
 

Dainty

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In my experience, healthy people neither understand nor refer to "faking it" in the sense of faking wellness. They generally cannot wrap their minds around the concept of looking and acting normal while in a lot of suffering from pain and fatigue. Thus if I were in that situation I would assume "faking it" was referring to CFS rather than faking wellness.

However, I appreciate Esther's suggestion about requesting clarification. A simple, "What do you mean?" is definitely something I plan to employ in future conversations, for a variety of reasons: it reduces misunderstandings, it makes them think more about what they're actually saying, and it gives me more time to come up with a comeback. ;)

We're all agreed we hate the name. However I'm of the opinion that for now we're stuck with it. As much as I despise it, that's what it's called so that's the name I use. If I think people are going to trivialize it based on the name then I don't mention the name....I just say something like I'm disabled by a serious medical condition and politely decline to share more information. However that's mainly with Internet interactions, which make things easier.
 

*GG*

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I never have good snappy comebacks in those situations, but I believe I would have told them to F off.

You have my permission to say so if something like that ever happens again.
This is what I was thinking, some people are just so cruel, it amazes me that women are this way, perhaps I am biased because I have a very loving mother.

If I did NOT suffer like I do, I would not think much of this illness either, (at least in my case, I look very normal, except that i have been gaining weight, since I have cut down on how much I do) luckily my family and a few close friends know how active I used to be and I am not a faker. I recently had disability testing done also, so that is solid proof, even though I look fine!

I have a well paying job, when I can make it! But when I do not work, I do not get paid. So why would I fake it when I could make lots more money every year than I have for the past 5 years of work! Ill for 7 years.

Thank you for sharing your story and keep your chin up.
 
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What really bothers me is that a lot of people that have a functioning body and 90% more energy than we have, are actually chronically lazy or complaining about minimal efforts. I know a person that works 6 hours in a pet shop and he doesn't stop complaining how hard his work is, how tired he is in the evening and how he doesn't have enough energy to do anything except work, eat and sleep. If I had his body and energy I would build an house and run a marathon daily (kinda)

So he is actually the lazy one, the complaining one, a person (like many others) that never learned the vital skills of adaptation, flexibility, will-power; but if we were to be compared I would be considered the "lazy" one, because I don't (can't) work six hours in a pet shop. But I actually think that considering my physical exhaustation level is a lot lower than his, I actually do a lot more than him. It's like saying that if a person with a pain tolerace of 5 is stung with a needle and a person with pain tolerance 100 is cut with knife, objectively the person stung with the needle has experienced more pain.

I have read there's actually a very simple way to test for CFS
In fact if you do any physical activity for 30 minutes, the next day you're supposed to match your performance from the previous day
Every healthy people, no matter how lazy, can pedal to the point of fatigue on sunday and doing the same on monday with the point of fatigue being the same.
A person with CFS will not be able to match the performance from the previous day and if he/she reached the point of fatigue after 10 minutes, he/she will reach it after 1 minute the next day, if he/she is able to move his/her leg muscles at all.

So, no matter how tired a person claims to be, no matter if one thinks one will collapse unless he sleeps 12 hours on sunday morning, no matter how tiring a person thinks his/her job is ... they're going to match an "activity to failure" performance from one day to another. A person with CFS isn't and this is as objective and pathological as it gets.

There are two reasons people don't understand.

First one: they feel fatigued too.
But it's a normal fatigue, explanaible by their activities and which goes away after a good night sleep
So you need to point out what you suffer from is long-lasting exhaustation not explanaible by activity and that doesn't improve with a good night sleep. Ask them if they remember how they feel when they have a bad flu, their legs feel tight and heavy and they can't even leave the beedroom. If so, then explain them that's how you feel IF you push too much.

And this leads to the second point: we are trying not to push ourselves too much
We're resting and reducing our activities, so people might actually see we're not always bedridden or so tired to be unable to talk
but they need to know that's so because we're living 50% to 90% less than they are, giving up studying, travelling, working, club dancing, playing and a lot of things we would rather do. Have you ever seen how agitated someone becomes when he/she doesn't have anything to do with his/her time?!

My theory is that humans have the extinct to do, even the lazy boy that doesn't do his homeworks, isn't planning to just breath and lay down but his going to practice with his skateboard or beat the video-game record (all things that could be considered learning, so he actually wants to learn... even if schools doesn't interest him) or have a basketball game. Tell this boy he can't do these thing but can lay down and stare the ceiling and he will get agitated and anxious. Tell a person he can sit on the coach for days if he wants to and within 2 days he will beg you to please involve him in some kind of activity or project. Humans want to do, being unable to do is the worst nightmare for a human.

So these people need to understand that we have to reduce our existence and waste our precious time in order to diplay the kind of semi-health we need for certain events and need to understand that partecipating to these events often means we'll have to rest in bed for three days in a row afterward with an extremely low pressure upon standing and muscle cramps; so we're actually sacrifing ourselves in order to please a person (to be at his birhday, at his marriage, at someone's mother funeral...)

When they tell you you're faking your fatigue, ask them "then why I give up on a lot of funny things, like cinema, dinners, parties, sport? I know lazy people who fake illnesses in order to have more free time and eschew works, but they also have lot of fun and are always going out, spending money at parties and clubs, travelling with friends. If I was faking it I would pretend I'm tired when there's something to do but would never miss a party, cinema, travel, vacation, sport-game and so on invitation; which is actually what I do all the time"

No sane human being would ruin his life in order to pretend to be sick.
If a person tells you that he would rather laying in bed unable to walk without pain and unable to dedicate his time to his hobbies, interests and passions rather than going to work; then you're allowed to say to this person that he is completely insane and actually the lazy one.

If a person tells you that he would be glad to live your life because it's total rest, then he is insane too. No sane person would spend his life staring at the ceiling rather than doing, which is the most important human instinct and the things humans love more, no matter how they claim to love "doing nothing", they don't!

Last thought: people have no problem understanding the issues of someone with an heart defect.
A person with a defective heart looks completely normal and can live a normal life as long as he doesn't push himself too much.
So when he is sick people have no problem understanding that "his heart is acting up" and when he feels good and partecipates in social life people have no problem understanding that "his heart is giving him some rest finally"
If they see the person walking on the street and laughing they don't think "he was faking the heart thing because he is fine now"

People have no problem understanding that if you're allergic to pollen it means that in those months there's pollen in the air you're going to be sick and that those months without pollen you're going to feel fine. If they see the person walking on the street and laughing on a pollen-free month, they're not going to think "he was faking the allergy thing, he is fine now"

In other words people have no problem understanding "reactive pathologies", those chronic pathologies that can be dormant or acute according to whether the trigger is there. CFS is a reactive pathology, it's a defective reaction to activity and its trigger is excessive or long-duration activity which for someone with CFS could mean also reading for 4 minutes or walking from bedroom to kitchen.

I don't say anymore i suffer from CFS, I say i have a defective neurovegetative system and can't tolerate any long-lasting activity without resting periodically or suffering flu-like symptoms (including fever in my case) the next day. If they bother me I use the "defective heart" analogy.

There are also several differences between someone with CFS and someone who is just being lazy or hipochondriac.

Lazy, hypochondriac people don't have swollen glands, fever or orthostatic low pressure.
Lazy, hypochondriac people feel better after exercising, people with CFS feel worse.
Lazy, hypochondriac people always underestimate their abilities, CFS people always overestimate their abilities
Lazy, hypochondriac people feel suddenly better if there's something interesting going on, like a dinner or a party, people with CFS don't and usually decline the invitation.
Lazy, hypochondriac people with a concentration/memory problem can "remember" if there are hints written on a sheet, people with CFS can't, because it's not that they have low memory but that their brain activity is fogged so even reading the actual answers to a test questions would still have them confused and writing the wrong answers (i.e a lazy student can pass a test using little sheets with hints, reminders or answers on if he didn't study for the test, a CFS student in a moment of brain fog can't even understand the questions and won't pass the test even if he studied and knew the answers the previous day)

Of course there are a lot of more differences involving post-exertional-malaise, medical check-ups, low immune system and so on but those above are the more straightforward and visible ones for a "skeptic"

P.S
I keep editing my message (that's the fifth time) because I can't write more than a couple dozen lines at a time.
Ask your "friend" whether that happens to her while she chats with her friend or when she's writing a post or comment about something she is interested to and whether that would happen if she was faking an ilnesses for whatever reason.