Chronic Fatigue Syndrome Support Group

I know this is not going to sound very positive, and it may not even be helpful...but I have gotten so fed up with being abused by thoughtless people that I really just try to avoid them as much as I can.

My cats are much more understanding and considerate of me, so I spend my time with them.

This disease will separate the good caring people form the rest. Remember those that have given you understanding and support, those are your true friends.

I personally don't see anything wrong with them saying "feel better soon". It seems they, along with most medical professionals, don't really understand CFS. If I get a comment along that line from someone that knows me, but doesn't really understand CFS, I just say thank you. I've got friends that will say, "I hope they can find something to help you feel better". Again, I just say thank you, and add, so do I. I don't think they are being rude or mean about it, they simply may not know what else to say. What do most people say when someone is sick with a cold or the flu. "feel better soon" If you've told them how you feel and tried to educate them somewhat on CFS and they still don't understand, then it's up to you on how to handle things. Either gracefuly say thank you or let them move on with their lives and you move on with yours. I have a brother-in-law that says to me.."but you look fine". Or "try resting then get up and do something, that always makes me feel better." I say yes, but the thing is with me...rest does NOT make me feel better. He's like ohhhh. Then I try telling him how I feel daily and he's like oh, maybe I have that, that's how I feel a lot. I'm like if rest and then getting up and doing something gives you more energy, no..you do not have it..and be glad you don't. So now I just try avoiding any CFS talk with him at all, because he's one of those that obviously just does not get it and never will. So you just have to chose how you want to handle things. No need to get upset and want to throw something at them, just simply be kind and move on.

I agree - there is no need to get upset - nor lose friends over this. They can't relate to how this affects us. Its just like when you love a loved one and your friends try to say something comforting yet they can't relate because they never felt grief. They are just showing that they care about you - they can't know the "right" thing to say. What does it matter? What DOES matter is that they care. Let's not get so inside ourselves in our illness that we wear our feelings on our sleeve. We should not expect perfection in everyone else. I'm sure there are times we don't have the right things to say to others who are suffering, but we say something to let them know we are thinking of them and that we care.

They meant well, they don't know cfs is a chronic thing and that you're already doing everything. They just want the best for you. I know what you mean though, 5 years into my illness and people still write get well soon. By now I know it is nothing like the little infections or the flu I had before, where you do a 180 in a few days. The thing that annoys me though, is the same people asking me how I am doing every time I see them, when it is always the same answer. You know, I try -not- to focus on being sick so now I say, It's the same as always but if anything changes I will let you know. It works.

Many of my friends thought I was faking my illness. Many people said, "You look okay."
It hurt, but I had a few friends who understood. You can't go to an empty well for water. Someone told me I wanted to be ill and I chose it. I was hanging by a thread and felt like I was being sucked down into a whirlpool, still I chose to go on and not hang on to the negative. I didn't have the energy.

Ooo the dreaded get well soon....I think they mean well when they say it, but I can relate to wanting to throw something at them. Its one of those things that we grow up learning to say when someone says they have a health situation. I think the best rule is if you don't know them well enough that you actaully could throw something at them....don't take it too personally lol. You can also avoid it comletley by saying you have ME or an auto immune disorder etc. Then explain the symptoms, people may understand better.

I think most people are unable to 100% understand CFS. When thy are tired, they rest and exercise and they are energetic again. No exceptions in their cases, so they think there's no exception. You must get better if you rest and exercise. If you don't get better very soon, you must be lazy or it's all in your head. I believe there must be at lest some people who do care about you. But even so, it's possible that they'll never understand CFS. Thus they'll constantly ask you "Have you recovered yet?" The answer is always no. So they say "feel better soon."

Sometimes I get very sensitive about those kind of conversations. I have to remind myself after the conversations that CFS is not easy to understand for normal people. As long as they are truly care about me, I should be grateful. And I started to avoid people who don't really care to know what happened to me.

For example,when I told a friend of mine who always eager to talk about his 'big plans' with excessive self-admiration that I was ill and that I was unable to work right now. He didn't even ask what happened to me. He said contemptuously "You are sick? Why don't you just get better." And continued to talk about 'big things' he's going to do. This kind of people/conversations is what I want to avoid.

I know that I often send hugs to members here, saying, Feel better soon, knowing they have CFS or MCS. It's just a nice thought. I totally understand the syndrome, as I have it myself.

I don't mean any insult by it.

But I know what you mean!

They may be clueless about CFS, but they're not malicious. Just uninformed. And, quite frankly, I don't think there is anything to be gained by trying to educate the merely kind who say "feel better soon." I take it as, "I hope you feel better soon" and think that's very kind.

I say, "Thank you."