* I find it very difficult to explain how this chronic fatigue effects me.

I don't think they ever understand. I have been griped out by family members, told that it's a load of crap, and deserted in some ways. My husband understands now. It took him years to understand but he finally gets it.

I don't think my other family members get it... they just want to be sure that they don't have to take care of me. They don't want me leaning on them or needing them.

And I can accept that. But w/o my husband I wld be in a really bad way.

O. I don't think I answered ur question. I stopped trying to explain it. They don't get it.. and I accepted that they never would. But my husband had to just believe me when i say "I can't "...

Howdy Kate-I have started to read this board again for support and tips. My guy gets me; his family does not. We usually visit his family is South Dakota in the summer-I do not tolerate the heat-so I end up in the hotel room by myself with the air conditioner running on HIGH!
It is pretty lonely. I wish CFS would hit the news in a big way-so others could understand our suffering and how unusual we are with are multitude of symptoms [chemical & light sensitivities, immense fatigue after exertion, headaches and rising fevers in the evenings,etc]. So, I hope that you find support and sunshine here on the message board!

I feel badly for you Kate! For all of us actually. This is such a common thing....people not "getting it". Especially, when one week we may be doing well and next week be practically confined to bed. I honestly think people think we're just not "trying hard enough"!

I'd like to see anybody spend one week in this dysfunctional body of mine and hear them say again, that I'm not trying to do better, do more, try harder. It's so hurtful when our loved ones doubt us.

My husband is a wonderful supporter. A lot of that has to do with him watching it happen to me. I was perfectly healthy when we married. Four years later, I was bed ridden. He has never doubted me. He knows how much I loved my life, how happy I was. I never used to have stomach pains, headaches, inability to sleep, sore joints....sadness, loss of contact with people I loved due to weakness. He says he actually watches the color drain from my face when I'm going into a crash. I've been down as long as two months, and up as long as three. This thing is totally unpredictable! It's life altering.

I stopped explaining this to people years ago. I just simply state that I have a "fatigue based illness" and can't commit to things ahead of time, sorry. That explanation just will have to do! I refuse to try to push myself into socializing when I'm exhausted. My circle of friends has become quite small, but I am happy with that! My true friends and my church family stand beside me. That is how it should be.

I hate it that there are so many young people, such as yourself, who are suffering with CFS. Please come here and get your support and your hugs, Kate. Cuz WE get it and we don't want you to ever feel alone!

OK? We'll stick together! Yes, we will!

Thanks for you comments and support guys it means a lot. I think your right maybe I just have to thank my lucky stars for the people in my life that do get it and try not to let the rest get me down.

Even as I am writing this my dad and I have just had a row. I said I didn't know when I was going to do something because I was tired right now. Then he starts yelling at me oh your always tired. I really can't help but be upset by it.

I can relate to your post. Once, I recall telling my sister-in-law that I was tired, and she replied "I'm tired, too." Even though I tried to explain to her that its not the same kind of tired, she wouldn't listen. I found stories on you tube that explained CFS, posted them, and still no one responded - no relatives, no friends. So I'm just trying to live with the fact that some people don't want to be educated, they want to believe what they want to believe. I do pray that they will open their hearts to the truth of the matter.

Heck yes we understand! I have so few people in my life who really get it. That's why I come here! Nobody here is going to ask me if I'm "sure I don't just need to exercise more" or whether I take multivitamins.

*facepalm*

You're in great company here :-)

I used to argue a lot with my dad. I gave up on sharing anything with him, or my mom for that matter. I often find myself still arguing in my head with my dad, as well as other people from my life, trying to prove to myself I'm not weak, and that my illness is not my fault.

You are a very strong person. Maybe those in your life don't see it because your fight is not on the outside, but we see it here. I hope you stick around.

Thanks for all your wonderful advice. It's nice to know at least the people here are understanding and supportive. Its so nice to talk to people who get it. =]

Hi Kate, I find its hard to people to understand what they dont see. For me I printed out the symptoms list and circled what I suffer and how often.
People presume its just always feeling tired and thats it. Not the pain, weakness, stomach issues, cramps etc.
We need to educate people and make them more aware and understanding :)

Some of this is understandable. I never heard of this illness until I had it for 2 years. So if someone doesn't know what cfs is or what the symptoms are, I'm not surprised.

It's when someone gives you a hard time for things you cannot do that it's really hard. Has anyone else been too tired to defend themselves? Not just tired of, but plain worn through?

When someone says "you don't look tired" I force myself to say, "thanks, I'm glad I look a lot better than I feel." It tells a person like it is in a way I hope gets through.

I get the "I'm tired too" as well. I try to think up one sentence lines of something I have experienced to explain. I often review these in my head before being around people just in case I need it. A few examples: "Sometimes I get exhausted from combing my hair." "On a good day I am tired all day long."

Without thinking about it I try to hide my symptoms. I try to stop myself from doing that. If someone sees you struggle they might get it.

I sometimes point out that I feel better today than I usually do.

I explain why I'm not doing something to people by saying that I will last longer if I don't.

And sometimes I say nothing unless it comes up. I have some relatives we see once a year that I doubt know.

Of course these things won't work with a mean spirited person. But if the person's problem is only that they don't understand, then this might help over time.

I also find that just having these things ready to say gives me confidence and takes away some stress. I used to read that article I mentioned every time I went to see people. Then I kept it in my pocket or purse in case I had brain fog and couldn't remember. Even if I didn't use it, it made a good security blanket.

I hope that is encouraging.

Oh yes, and for the angry dad... Try talking to him when he's not mad and not trying to get you to do something. If you are lucky he will listen. Make sure you tell him it hurts your feelings that he is hard on you for things that you cannot help. (Being too tired to do what he asks.)