Hollie, a lot of times I don't tell people either. I usually only do when I can tell the relationship is getting a little deeper, and the person starts inviting me places, etc. and then I feel like I need to start telling them why I can't, since I'd rather tell the truth than for them to think I just don't like them or whatever. But I hate doing it. Because like you said, most of the time, I can tell the person doesn't understand at all, and that makes me irritated! I've been criticized a lot in my life too for just telling it like it is, and I guess now I try extra hard not to sound negative or like I'm complaining. I'm still too much of a people pleaser and I wish I wasn't. It would be so much easier to just not ever care what people think period, as long as you're being truthful.
Tonight, my daughter's school had a movie night. I was really too tired to go, as usual, but this was such a rare event and my daughter wanted to go so bad, so I went. I started talking to a woman there and somehow it did lead into me talking about Cfs. Very surprising, she seemed really interested, and she started opening up about how tired she was all the time, and how she struggled to get through the day, and other health issues. She said she got mono when she was younger and never seemed to recover. So, I'm thinking she probably has cfs and doesn't even know it. She said her husband is always trying to get her to be more active and she just can't get motivated. I told her some people are never the same after mono, which is what started my Cfs. So anyway, maybe I helped this woman. Our daughters are becoming best friends at school, so I'm sure I'll be talking to her some more.

We shouldn't feel ashamed for having this illness, although I have definitely struggled with those feelings of shame over it.
It's just normal to desire understanding and support from people when you are suffering, and when you don't get that, it makes it so much harder.
But that's what is great about support groups like this.

I hope all that made sense. I'm up too late and need to go to bed. :)

i have really struggled with this too. i find that i am telling ppl that i feel need to know because i am cancelling plans with them and i feel like i owe them an explanation since prior to being ill, i did everything. i am telling ppl that i am in direct contact with. i feel so self-conscious about it-i am so aware of how much it is affecting me that i sometimes feel like everyone can tell. it's such a weird feeling.

it's hard to explain and it's hard for ppl to understand. i have some ppl who seem to understand for that day, but, then expect me to feel better the next. some ppl are telling me what i should and should not be doing and they feel like if only i did x, y, z, i would be cured. for some ppl, i have just told them that i am going through some health problems and have kept it at that.

i have always been a people pleaser so i struggle when i disappoint ppl. that's been new to me- but i have to do it. right now, my health comes first.

i get irritated too when i feel someone does not understand, so i am glad that i found this support group!

Hi Hollie9- I know exactly how you feel. It is so hard to know what to say to friend that stay with you. Once I was sick, I lost all my friends. No one called, emailed, texted - nothing. It was so difficult for me, and I plunged into isolation along with depression.

Fortunately, I have a very supportive husband and family. But other than that, I have very little contact with anyone. Some of that is I don't really want to see people anymore. I am in my 5 years of being sick and have gained at least 30 pounds. I know have chronic pain in my neck and back... and to be just honest about things, I am just not the same person I was and should any friends from my past see me know, they would be shocked.

The thing I have learned from all this (for me) is true friends will learn to understand and support you. Please know that you have friends on DS that will be here for you when you need them.

Take care, and know I am sending you vibes of healing and energy... XOXO - TD

TDScarlett, I sometimes fall into a deep depression from feeling so isolated too. Sometimes, as my husband and little girl leave out the door to go do something fun, I bawl my eyes out and feel so alone. At other times, I am thankful for isolation because I can just rest and not have to say anything to anyone. Late at night is sometimes the most peaceful times for me because everyone is in bed, it's quite, and I can just relax. I go back and forth, I'm not sure what I want. :) Actually I know what I want, I want to be completely well and be able to be social and enjoy things too like others do. And there are those rare times I can go out and be social and feel decent at the same time and those times are so refreshing, but they seem to come and go so quickly. And then other times, having a little seven year old girl, I am forced to go out and be social whether I have it in me or not. And I feel like I say the dumbest things to people at those times because I can't even think I feel so horrible.

I may be wrong and a real pain to others but I almost feel a need to try and educate others about this. I was so ignorant and didn't understand it at all until I got it myself. Most of my friends saw my rapid decline in health so they know how bad it is for me and they know I am not faking when I tell them how I feel.

I guess I don't go around preaching about it but if someone truthfully asks me how I am, I tell them. Most of the time I say it is either a high pain day or a low pain day but some days I just say that I feel like crap. I try not to feel ashamed about having this. I certainly didn't ask for it and I didn't do anything to deserve getting it, so why should I feel ashamed?

If it bothers people when I tell them what I have and how I feel, then they aren't my friends anyway. But I do realize that this is a very personal decision that each of us has to make and there is not a right or wrong answer.

Some of my friends "get" what I have and are quite concerned how I feel, and I tell them exactly. They think it would be so frustrating to have to be bedridden during a relapse.

Others just forget and don't ask me anything about my health.

I agree we shouldn't be ashamed of this illness, I think if I had diabetes or something recognizable, I'd get more understanding. It's a shame CFS isn't more widely known and there is no real treatment.

Lane Z, I can totally relate to saying dumb things when not well at an event where others are talking to me. My brain fog gets in the way a lot. And I've also found when I open up about it to strangers that there are others who either have it, know someone who does, and can understand. That's always a surprise.

I just told my neighbor because I was getting the feeling he was bummed that I didn't get my garbage cans back to the house early in the morning. So far I haven't heard back from him, but at least now he knows.

I think I hide it because I want to be normal and don't want to be pitied.

hollie

I agree we should educate people as much as we can.

Hollie, don't feel bad, I sometimes leave my garbage can down there all week. :)

bump.

Lane Z...

I feel so much better knowing your cans are there all week. Heck, you can just take the new garbage out to the cans and leave them there. You're really lucky :)

hollie

Yeah, that's what I do a lot of the time. :) It's one less thing. One time, when I did brink it back up, I forgot to take it back out on the day of pick up. I thought I should have just left it out there like usual. :)

Hollie,
I used to push myself until one day I could NO LONGER just push myself. I've found over the years that I have fewer and fewer friends because I am unable to work any longer and it is really hard to keep a friendship going when you have to constantly cancel
.Eventually people seem to guit asking. I've used every excuse possible but eventually I try to explain it and you can almost feel the other person's eyes glazing over with boredom.
I don't for the life of me understand why ANY person would think WE (CFS's) would make this up. I am so tired of trying to explain my total exhaustion to someone who replys "Oh, I know I get so tired too" or " I don't sleep well either".
Sometimes I feel very irratated when people are insensitve but most of the time it still hurts very much when I thought some people were true friends only to find out that was only when I was able to be my fun active self. They don't seem to want to just come and sit and visit with me.
My heart goes out to you because I can hear the hurt from your post!
I totally understand how you are feeling and it does feel so unfair. Sometimes I almost wish I had a terminal illness so others would care more and be more compassionate.

That's really what we ALL want and NEED but unfortunately with CFS there seems to be very little compassion from the HEALTHY others.

Yes, I hear those comments from people too, "I am tired too". It's interesting that some friends I never expected came forward and are understanding, while some of my "best" friends disappeared.

And yes, it would be nice if we didn't have to say Chronic Fatigue Syndrome because people don't know what we have. Sometimes I say I have Myalgic Encephalitus and get a bit more respect since it sounds more serious.

What is really unfair is that so few doctors know what CFS is and have no idea how it is treated...in fact no treatments have been approved. I've had doctors tell me they know nothing about CFS and don't intend to learn about it. I would have to drive hours and probably wait years to get into one of the handful of doctors who do know about it.

I guess that's why I'm embarassed about it, Chronic Fatigue Syndrome just sounds like fatigue and very few know what I'm talking about.

hollie

After 13 years and going through what all of you have described....sure know how you feel....I am better than i was coping and I am more ready to forgive

Now I have decided to be more proactive and help to educate people as much as I can I also call this ME/CFS...

On my FB I now share regularly info from the ME groups and youtube testimonies....as this gets to a wider community...I don,t get much response but I do get some and I can see the positive impact....

The friends i stick with are the ones that do show genuine interest and care and I find they are mostly those who have chronic conditions or health issues themselves...thats why texting is great....

I also don,t wait for contact I make the contact..even if it is a text.....

I have worked really hard with God,s help to not feel ashamed or guilty about being ill and it is better....

now I am real wherever I am and its not that I don,t care about people but I am trying not to involve myself with people that don,t care

My heart goes out to us all at times...and I am sure glad we can express ourselves here and know we are heard....

thanks for sharing LuAnn

hugz gentle ones at that

Sorry Hollie..thats the ME for ya can,t even find who posted lol

thankyou for your post

Well. I don't have too many answers when it comes to who and
who not to tell and when and when not. I struggle with that one
as well. The worst answer for me, is if I say I have chronic
fatigue and someone starts talking about a new vitamin or
supplement they're taking. As if that's the magic wand and if
I'd only try x, y or z everything would be fine. The worst of all
is when they try to sign you up for some marketing program.
So, I'm more careful about sharing.
But. When it omes to garbage cans. A whole new world. Where
I live, we have to keep the cans in the garage except on pick up
day. I now envy those of you who can leave them out all week.
A good way to go. Mine. If I'm too tired, I just wait an extra week
and they stay inside. Luckily, I don't have too much trash. .