very much so, i was called lazy, and told i didn't want to work, and there's nothing wrong with me it makes me feel like death warmed up.

especially the close ones... my father in law said the other night that I need to just straighten up and that my ability to get better depends upon my character and what kind of person I am. I wonder if he would have said that if I has a diagnosis of cancer? People don't realise this is just as real as any other illness.

Yes! Seems to be par for the coarse. I have give up on most people understanding, doctors specially, they are of a driven mind set it, is just to hard for them to get a handle on anything we go though I believe. We live in a country of work driven maniacs anyway, they figure if they run ninety miles an hour they will what? I don't think it is how much a person does in life, but what you do with what you can do. I do the best I can. I know it won't satisfy some one some where no matter what I do. God help us all we need it.

yes! I see that everywhere. I'll have a few good days or even occassionally a few good weeks and then when the downward spiral starts again everyone wants to know WHY? How do I know? Oh I do know to some extent, I crammed to much in to the feeling good time - the stress levels have snuck back up on me. Most of the time the people I care about can see it in my eyes and expression, I know they try to understand - but I don't understand so how can they? - - i am very fortunate with my Dr. She is a recovered cancer patient. She understands what it is to be up one day and down the next, she also believes that cfs is real which is half the battle. I'm sorry you are going through this, come and vent as often as you want.. WE truly do understand!

Definitely and most frustrating with close family members. I get very tired of explaining to them why I cannot do the things I used to do anymore. (Like driving 45 minutes to my daughters house)

yes I find this very much so.People just cannot understand it for some reason.It is like are illness isn't important enough for people to understand. I think a lot of doc contribute to the problem as they don't even get it. I am fourtunate enough to have a fairly good dr. We just have to learn and except that we can't do the things we did before and enjoy the things we can do now.It is sad that we are treated this way though. marilyn

I believe that one of the reasons people are so negative about this illness is the total appearance of US! WE don't look sick so it's hard to believe that we are so ridiculously messed up. Also another thing I would change if it were in my power, is the word "fatigue" This is not fatigue, this is paralysis, emotional and physical.
So you take a stupid word like fatigue, which normal people feel after a bad day at work, and the fact that we don't look like we're dying and those things pertetuate this misconception that we are functioning individuals looking for an easy out. It's cruel that we are treated that way, but as I said, they see us looking well and claiming chronic fatigue, and they go from there. It's stupid. But I think this is why we are mistreated so badly.
It's really, really stupid.

I had this for years from my family. Some were strightforwardly unkind but others just didn't mantion it. The fact that I was retired from work on health grounds and live on disability payments seemed to pass them by. I still don't have any comments from many of them. My sister asked if I'd told my brother about recent tests and was surprised when I said no. In fifteen years he has never asked me anything about why I had to leave work etc! I find that my friends are much more concerned, particularly those who knew me before the ME struck.

As usual i totally agree with darla I don't look or seem ill to people so i feel they don't really believe me, some more than others. I am probably also my own worse enemy I don't tell many people about my illness because i assume they won't understand prehaps if i told more prehaps if i told more people i would find some that understand.
I also agree with arbgrandma
I don't really understand my illness so how can others.

Sometimes I think it is that some people can't relate to a person who is ill. They have never been ill so they just can't empathize with a person. Other times I believe people forget that we are ill, because we don't often look it or the other people just are focused on their own lives, they don't live this day in and day out like us. I can understand how people can over look and not understand us, but the harsh comments I don't tolerate and let the person know, nicely or I ignore the comment and go on with my life. After all I am in control of how I react to others and if I stay calm and happy no one can take that away from me, even if they are ignoratant.

My friend and her husband accused me of having no "stickability" she lectured on and on, her husband told her (which she relayed to me) that he thought I was lazy and all I needed was a good kick up the arse! Last time I saw her was 2 weeks ago. I was shocked at her. and I was really hurt. I would give anything to be able to work, earn money, stick at something without having to stop because I hurt so badly. I told her this is not in my head, and she backtracked... how hurtful is that. I don't think I can call her my friend anymore

As they say, "With friends like these..."

I know it's hard. I know it hurts like hell. But these are NOT friends. Put them on the acquaintance list or banish them altogether. But don't allow them to confuse you. It's just not their misundertanding and cruelty that negatively impacts you so - it's your own innocent trust and unrealistic expectations. When you get that part straightened out, you'll fill those spots with real friends and be glad you did. You'll probably find some of them right here, if you care to look. And in your 'skin' life as well, though they're a bit harder to find when you don't get out much. But they'll be much better because they don't come with conditions like, "I'll like you only as long as you are like me and do what I want you to do."

I find, like others here, that I do still have friends these days - but not a healthy, injury-free, unscarred soul in the lot of them. Each and every friend I have today suffers some disability, visible or invisible. They have what I call Gimp Soul. They've walked through the fire, they know what suffering looks like and feels like, and they simply connect to us without all the judgments. From them, I sometimes get useless or even wrong advice, but never the judgment, never someone deciding whether you are worthy or not. You just learn where to invest yourself better, and the returns are more than excellent.

HOW you choose to blow off the non-qualifiers is a matter of style and taste (or lack thereof - hee!). I like to start with rant flambe for appetizers, then filet of ignoramus as a main course, and finish it off with warm friends and chocolate...but that's just me. If someone screws with your head, just screw with theirs right back (leaving abruptly is the simplest way, if possible), and immediately go do something nice for someone who will appreciate it - even a small thing. That's how you take your power and your self-worth back. You're not lazy. You just need to hang with a better class of people, that's all. ; )

I hate being called lazy. My husband called me it last night and I was furious that after 4 years of being with me he still doesn't understand. I'm fed up with people saying i'm just using it as an excuse when i don't want to do something. I don't chose to not do anything, most of the time I really can't. When I was at high school I was housebound and homeschooled which all the other kids thought was cool. Oh yeah, it's ace sleeping constantly, not seeing anyone, not going out, having a constant headache and thinking that everyone thinks you're a liar when you're 13 years old. Brill(!)

I have found this too. Some of my family members are supportive, but I can see they wonder sometimes. My uncle said there is no such thing as CFS,it's just an excuse to be lazy (even though I work)and some other stuff, which hurt me a lot and has left me feeling angry.

Yes. Close ones are the worst.