This sounds about normal. I lost a lot of friends or experienced people just keeping their distance. Part of the problem is with the title 'chronic fatigue' as it sounds as though you are a bit tired! I found very few people were really there for me. My advice is treasure those who are willing to understand and don't expect too much from the rest as you will be disappointed. You really find out who your friends are and also that alot of people can't deal with illness. It's a very painful thing to go through. Sorry it's happening to you.

Hi Ruby, I'm sorry you are having to go thru the problems with your friends. Yes, that is very common. Even family members don't always "get it." Sometimes friends and family don't know what to say, so as a result we feel hurt. I hope that some day people will have more of a knowledge of the disease. I was diagnosed 14 years ago and the first responses I heard was "we are all tired." So, I think it's sad that today we are not any further with the disease knowledge on the public. When someone asks me about the disease, I try to always take the time to explain and answer questions. Hoping this will educate people on the "realness" of the CFS. The support groups are great because we understand specificly what we go thru on a day by day basis. Just always remember you are not alone. Enjoy each good day you have.

Yes I really think half of the problem is in the name of the illness! It just doesn't sound serious. I guess even when I say it, it really doesn't sound that bad. It's only because I am going through it that I know how bad it really is.
I am really for sure seeing who my true friends are, it is just a shame that it's only about 50% of what I thought I had.

I would say that retaining 50% of your friends is a very high score. I lost 100% of mine...some literally laughed in my face when I told them about my diagnosis.

I've never gotten anywhere trying to explain the seriousness of this illness. My brother-in-law has told me repeatedly that if I joined a gym and pushed really hard, I would get over this. Most of my family seems to think I'm mentally ill or on drugs...the rest I never hear from anymore.

So I'm on my own...I get support here on DS and nowhere else.

Yes I'd say 50% is great. RichieD, I'm very familiar with the 'just push yourself harder' and 'your just lazy' attitude. It's horrible. Ruby, I'd just focus on the people who are there for you. It is very disappointing but it's a very common experience. People just don't want to be around illness. But with the people who are there the friendships just get stronger and deeper.

Thanks all for your comments and yes 50% is pretty good. I think it may be due to the fact that I was an exercise bunny before this so most people get that I wouldn't not exercise unless I am really ill. RichieD - that completely sucks for you! Lucky there are support groups like this but still it must be sooo hard for you. I wouldn't know what I would do if I didn't have my family's support. There are so many sad situations surrounding this illness and it makes me mad!!

You received the "normal" response that ppl get when they tell family / friends they have been diaged w/ CFS. I was told that it was a load of crap, that all I needed to do was push thru it, I needed to get out and get the blood flowing... all kinds of crap.

My goals in the beginning of my journey were to STAND 5 minutes at a time. I was housebound and bedfast the first year.
I found out that 99% of my friends were PLASTIC. They were not there for me. Neither was the church I attended. NO ONE called or came to visit or nothing.

I was VERY angry... I could not believe it.

But the truth is .... ppl are too busy to give a rat's a**. And that is sad. Another thing is; ppl do not LIKE to be around sick people. It makes them have to take a look at their own immortality and think of the possibility that something could strike them any time any day any where... No one wants to look at that ... So they avoid sick people.

I let go of EVERYONE that didn't stand beside me on this. The last 3 years have been painful, and the most difficult years I have faced in my entire life. People that have come into my life ( Divine Connections) I hold on to. Others I have kicked to the curb and never looked back. And now that I am stronger, I would have the balls to even tell them WHY. I don't need ppl in my life that are not going to be there for my difficult days. I was glad my eyes were opened to who was and who was not there for me and a true friend.

Sorry... "Mortality" lol

This is truely the hardest part of the "acceptance" part of our illness. I thinke WE accept it, cuz we're stuck with it and are plodding through on a daily basis, if we can get up that day......

I lost a churchful of people! No kidding! I lost most of my friends, because a lot of them were from my hospital job. I knew literally hundreds of people over the years, and once I had to quit work, my social life, and my career went down the drain....the friends and acquaintences followed. It was SO HARD!

Fortunately, and this is such a blessing, as year three began, I became a little more outspoken with my church family, and the few people that were friends, that DID stick with me, and believed and supported me. EVERYBODY else, got kicked to the curb! It had to be done. I wasn't going to have to constantly make excuses for WHY I couldn't do this or that, and then deal with the look on peoples faces as they said I looked "fine to them"!!! I stopped making excuses and dumped the toxic naysayers right on out of my life. Things got much better.

I do have a supportive family. Thank God for that. My husband is an angel! He does everything for me!! He has never doubted my illness. I think a large part of the problem with our friends, is that they only see us on a "good" day. Cuz that's the only time we can get out! SO, to them, we are either seen as lazy, uninterested, or they take it personal somehow that we have disappeared. "Chronic Fatigue" are the words for someone who had a bad day at work. This name is the one of the biggest parts of the misunderstandings we have when trying to explain our illness. It's a crime really.

DS has saved my life. I need this place so bad! I have made friends that I can relate to through comments and hugs here. I can talk to then on the phone! I skype with people. I have met a few friends in person. THIS ILLNESS is real Ruby. And we all know it! Hang out with us as much as you can. Feel validated. We know you're not nuts. Rid yourself of people who discourage you or mock you......they are not worth your time sweetie.

I made my world smaller, and six years into this illness, I am just pleased as punch that the people around me, love me, believe me, validate me....and send me chocolate!! LOL

Hang in.....God bless ya! This is just one miserable illness to have!

This is a difficult journey. First we lose our health, our work, then our friends. Everyone is correct here- this illness really separates the wheat from the chaff. The good frinds stay - the ones that are not afraid of seeing the dark side of life, the ones who really love you.

I got so frustrated this spring with friends & family comments I emailed a bunch of them Artos' article. (she's a DS/CFS memeber)

http://www.scholarsandrouges.com/2012/03/25/artsunday-using-photography-to-cope-with-chronic-fatigue-syndrome/

It helped with some relationships - they started getting it. With friends who were supportive already, it gave them a deeper understanding & I got some wonderful feedback on their respect for how I deal with this illness. And some people didn't respond & never will. They are on the curb to quote some of the rest of you.

And I'm with Darla about DS - I'm starting to make some incredible friends here. I no longer feel lonely. I do have a social life - it's just here on line with people that get it because they are living it.

LYNX!!

I wanted to read Artos's article, but the link you gave didn't work. Is there another way for me to get to it???

Thanks a bunch!

Oops- one for brain fog!

http://www.scholarsandrogues.com/2012/03/25/artsunday-using-photography-to-cope-with-chronic-fatigue-syndrome/

Thanks so much for all of your support! I am feeling emotionality better already!!

lynx, I feel how you feel
I have Fibro, Myofasascial pain disorder and CFS.. I don't feel that fibro and cfs is a accurate name anymore for these illnesses. Fibro was just found out to be a missfiring of the brain. I have so many overlapping symtoms that it is confusing to me, and my doctors who simply can not do a thing for any of them. I have no friends now. I am want to sleep all the time. I didn't finish sxhool.I feel like I am weighed down by exhuastion. Sorry about my spelling. that has gotten screwed up. I have no family support. I do have a coulpe family members who understand the rest think I am simply lazy and I made something up to get SSI. Sorry venting.

Yup! At some point, unknowledgeable people's advice about "diet and exercise" may drive you to consider homicide. (Don't worry, you'll be too exhausted to go through with it.)
You do your best to keep plugging away at life, trudge through the best you can, force yourself to fake your way through everything and then realize that your lack of complaining and trying to not be around others when you aren't doing well has led people to believe there is nothing wrong with you!
I have tried, with limited success, to explain that when I am at my worst, people will rarely, if ever, see me. (I have been symptomatic for about 25 years, unemployed and basically homebound for the last 3.) I try to compare it to having the flu - when you are feverish, vomiting, and coughing up your lungs, do you go to work / see friends and family / volunteer for responsibilities? Of course not. But when you tell me you have the flu, I believe you, even if you aren't vomiting on my shoes right now.

For what it's worth, the people here understand and will support you however we can!