I struggled for years with feeling guilty because I was ill but didn't look ill. CFS awareness is better now than it was when I was diagnosed in 1997. If you can believe that!!

I didn't want to keep explaining it so I sent an email to a Red Hat Society chapter I was part of. They asked me to leave. "We don't want to hear how sick you are."

My next tactic was to get info sheets from CFIDS.org. I think they are free or very cheap. But, they give a clear picture of what CFS is and what it's like to live with it.

I'm still struggling with feelings of guilt because I can't do what I think I should be doing. I can't visit my mom who lives near Pittsburgh, PA. It's a long trip and I don't have the energy to spend time with her sitting in an uncomfortable chair listening to the same complaints over and over.

Twice after visiting her I had back surgery within a month of my visit. My surgeon said he would write a note to my mom excusing me from ever visiting her.

I can't be the person I've always been. I grieve that loss every day. But then I remind myself that the silver lining in this is that I was healthy while I raised my three kids. They were in college when CFS came into my life. Unfortunately, the closest one is 500 miles away. But they call and send emails. I know that if they lived closer they would visit and would help around the house.

My husband is a workaholic so the house doesn't get cleaned very often. I'm going to hire someone.

Get the info sheets and hand them out. Point out the website because there is information about how to help or be supportive of someone with CFS.

Hugs, love, and prayers. I'm here for you. I'm a good listener.

My then-new BIL & I used to go back and forth about CFS, what it was, what symptoms it caused, how little I could actually do, etc. I think one of the most difficult things for him to understand was the PEM & why I didn't know sooner to stop whatever I was doing before it ran over me like a Mack truck.

Then there were things like IBS, painful lymph nodes, brain fog, blurry vision, etc. So when he finally "got" it, he said to me, "So it's MORE than just being tired?!" That proved that he did understand better, at least for that particular week.

What gets to me is when my one and only niece, who I love dearly & is now in college, would be insolent and demeaning. "WHY do you need help carrying that suitcase up this long flight of stairs?" "WHY can't you put that bookcase in the car by yourself? I can do it by myself!" It just hurt my feelings so much when it felt like she had no empathy. You're young & healthy, honey, does it really cost you that much to give me a hand when I ask for it?

You are right to get to the point you mentioned at the end of your post...not worrying about what other people think because it's wearing you out and just worrying about taking care of yourself:)!! Also, I've noticed saying I have an auto-immune disease is much easier for people to comprehend than saying I have CFS.

I think we ALL go through what you are talking about Luna. We don't want to constantly be explaining ourselves to people who don't really even care! They don't get it.....they see us looking ok, so they don't believe we aren't really ill...and I'm just glad I stopped working when I did, because I worked in the medical field, and I can tell you that for a lifetime, I had never even heard of CFS myself, so I don't blame the general public.

The best thing we can do is find a place of honestly and humility within ourselves. WE have the illness. It is our truth, whether others chose to believe it or not. As long as you have accepted your limitations, you need to stick up for yourself and find an answer that feels good to you.

Do you want to know what I say?? If someone asks what is wrong with me ( or any question about why I disappeared off the face of the earth and am I coming back?) I often will say. Did you ever have mono? Most people have. I tell them that I had it in college. That I now have the virus active and alive again, and it's going to stay that way. There is no cure...so I will do what I can, but I'm sick, just like I was with mono, right down to often being bedridden. Then I say, I take it one day at a time. That's how my life rolls now. I don't even give it a name. I compare CFS with something everybody else knows about. This answer seems to calm people down. If you've ever had mono, you remember being stuck in bed for about six weeks and being unable to move.

When I first got sick with CFS, I thought it WAS mono. It's so similar in so many ways.....I just never get back up from it. That's what I say. It's the honest truth.....permanent mono and then some! But people can relate to mono...whereas CFS is hard to explain and I totally feel your plight.

Like I said, we ALL go through this. You have find a pat answer, stick to it, and stop feeling guilty. You didn't chose this ridiculous illness.

God bless!

I have always downplayed too. Until recently. My fibro and CFS have gotten so bad that I can no long pretend and to be honest, I'm sick of faking it!!!
I can't do what I once could and it's time for me to admit it. I think that was part of it, my own refusal to give up and accept what I have is going to limit me.

But what really made me become honest about my situation is that I was losing what little family I have. I love my SIL and she was getting hurt because I promised her I would come and visit and haven't. This promise was made before Christmas!!! She has gone out of her way to try to get me to come. I just haven't been up to it. Cold weather KILLS me!
I finally realized she didn't understand why I couldn't because I was not honest about my condition.
I finally posted a letter to my facebook . It just happend to be on a day when I was super depressed and 'tired of faking it'. The next day I was embarrassed about posting it. But I left it anyway.
4 days later, my MIL asked me and my SIL out for lunch. It was a good day for me so I went.
My SIL had seen the letter I had posted to my facebook page, she asked me lots of questions and was really sympathetic. She said "I didn't know!"

So it was my own fault.

I would encourage you to find a way to get across to your family and friends exactly how your condition affects you and that it is a real condition and you have an actual diagnosis.

Here is the letter that I used. I did not write this but it describes many of us to a T.: Best wishes to you!
...................................................................................

Please understand that being disabled/sick doesnt mean Im not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but Im still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time Id still like to hear you talk about yours too.

Please understand the difference between happy and healthy. When youve got the flu you probably feel miserable with it, but Ive been sick for years. I cant be miserable all the time, in fact I work hard at not being miserable. So if youre talking to me and I sound happy, it means Im happy. Thats all. I may be tired. I may be in pain. I may be sicker that ever. Please, dont say, Oh, youre sounding better!. I am not sounding better, I am sounding happy. If you want to comment on that, youre welcome

Please understand that being able to stand up for five minutes, doesnt necessarily mean that I can stand up for ten minutes, or an hour. Its quite likely that doing that five minutes has exhausted my resources and Ill need to recover imagine an athlete after a race. They couldnt repeat that feat right away either.

Please repeat the above paragraph substituting, sitting up, walking, thinking, being sociable and so on it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. Its quite possible (for me, its common) that one day I am able to walk to the bathroom and back, while the next day Ill have trouble sitting up. Please dont attack me when Im worse by saying, But you did it before!. If you want me to do something, ask if I can and Ill tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that getting out and doing things does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldnt you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now it cant be put off or forgotten just because Im doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I cant spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while youre sick/disabled. This doesnt mean Im not trying to get better. It doesnt mean Ive given up. Its just how life is when youre dealing with a chronic illness/disability.

If you want to suggest a cure to me, please dont. Its not because I dont appreciate the thought; and its not because I dont want to get well. Its because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then wed know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But dont expect me to rush out and try it. I might not even reply. If I havent had it or something like it suggested before, and it sounds reasonable, Ill probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you people who are able-bodied for many things.

But most importantly, I need you to understand me.

Very interesting set of posts here. Thanks for sharing.

I believe that we've all had to come to terms with living with an "invisible" illness which is still poorly understood by the medical community as well as having received bad press for decades. That's a serious double blow. Some folks may hear "CFS" & decide that it's still the Yuppie Flu they heard about once upon a time & haven't exactly kept up with the more recent developments in its research.

I once had a therapist [who had CFS herself] declare to the group that we all needed to be honest with those around us about what was wrong. The ironically funny thing was that she herself had not told her parents nor her college employers. So it "do what I say, not what I do".

Yet for me, it struck a chord. I could not begin to accept who I was with this syndrome if I could not acknowledge it to others. I couldn't move on with what my life had become and grieve for the life I had lost if I pretended I was OK.

This may not be the path that others choose to take and we may not share exactly the same journey, but this is the one that helps me find my way up the mountain. May you find the path that is right for you.

Hey Luna x,
I have a very supportive wife and grown children(I contracted it 12 years ago). It wasn't always like that it took time and energy and many physicians, my practice partners and insurance companies finally admitting it but the support grew although I doubt they have the vaguest idea of how debilitating it is( I think my wife does though). Here is something to think about though. You have to do what you said at the end and stop caring about what others think because even you and i are not sure of what we have and all it's manifestations how can you expect a someone who hasn't walked a day in your shoes to understand. In an ideal world that would end it but i am still guilty when I am laid up or can't do things and because I was/am a physician no one these days no one would dare say "it's in your head" although at the beginning both fellow Drs and insurance companies thought I was having a nervous breakdown or a drug abuse problem. Concern yourself with helping yourself and patiently cultivating understanding with those you care about. Till the day he died my old man never ever understood and thought I quit on my practice. It hurts but you won't get any better brooding on it or putting on a happy face all the time. Be patient be honest like you said and be yourself, it's not a perfect world but you will find things improve maybe or maybe not the CFS but your surrounding support. You got us too. Jim

dfg

oops sorry didnt mean to do that :s

Luna, I completely understand how you feel ashamed or embarrassed about having CFS. I dealt with these feelings a lot at the beginning of my illness. I have had CFS for eight years now and I still worry what others think of me. I remember people telling me it's all in my head or they wish they could sleep all day like me. These comments still get to me, but I have finally started to realize that these people didn't mean anything by it, they just truly don't understand. Lucky for them they don't have a clue how CFS feels, unfortunate for us though. Eventually we all just have to be honest with ouselves and our loved ones. I have lost friends due to my illness, but I have also realized what friends and family really do care and love me. I am so sorry you are going through this. I know it is so easy to feel all alone, but please remember you aren't. God knows what is in our hearts and what struggles we are going through. People will always talk. If it's not about us, then it's about someone else. Please believe in yourself and know that you are worth it, Chronic Fatigue Syndrome and all!!