Uninformed people!

[lvfrogs]

Is there anyone else out here that is just plain tired (literally) of everyone around you not understanding how you feel? That to get out of bed each day is a miracle, much less keep up with cooking, cleaning, errands, etc. Not to mention anyone with a job dealing with CFS! I just wish someone would tell me once in a while, you are doing great, so proud of you for not letting Fibro and CFS get you completely down!! I could stay in bed all day....
just needing to vent and I know on here, you will understand!!

Working on getting better and finding better ways to help me, just having a down day!

[FurballsMom]

OMG!  I've heard people in the past talk about people the way they talk about your co-worker.  People can sure be cold-hearted.  This really is heart breaking.  Here she doesn't even talk about what is going on with her and the co-workers talk so disrespectfully anyway.  I know people are uninformed, but there is no excuse for talking about someone the way they talk about her.  One would think they would stop talking even after having the stroke right there in front of them.  Some people are just plain cold.

[SassySharon]

I don't even tell anyone about all the pain!!  No one really seems to care one way or the other.  It is like we bring them down or that we are just looking for attention!!  Like IF I wanted attention I could sing, and since I can't carry a tune in a bucket, that would get me plenty!!  And it is soo true, if you get up and get around, just making the best of it that you can, then we are suddenly "cured" or "not as bad as we think" .   Now we can be disregarded even more.  My husband is an awesome man and he deals with pain, but it is from injury and nerve damage caused by a tumor on a nerve.  Mine you can't see, or pinpoint where it came from so it is invisible.  So, he just doesn't get it.  I have no idea where it came from either but I diffentley know it is there.  
A girl I work with has multiple health issues like I do, she never complains, but has to make frequent doctor visits and er visits.  I hear the people talk about her being a hypochondriac or that she just has "good insurance" and wants to use it.  Poor thing!  If they only knew.  Why can't people have compassion without having first hand experience.  Anyway she had a mild stroke the other day while at work and they all thought.. well, here she goes again.  For Real!!!   My heart breaks!!  so when I go, I am not telling everyone!  But maybe that is why more people don't get it.  We go around hiding our symptoms and not addressing them, so most just think everything is okay.  I am simply tired of grinning and bearing it.  But will I change?  No.  Sorry for all the negativity, I am normally the "my cup is full" gal.   I too am the "bread winner" as my husband is unable to work.

Okay, enough!!  I want to support each of you by saying,  You are Important and I know that your pain is real. You are doing good, just by doing.  We can be here for each other.
I don't know if my pain is Fibro, Thyroid, Sjogren's are related to my spine and neck issues, I just know that you guys make it better!!             -sass-

[wonko]

I am extremely fortunate that my CFS/fibro are secondary to chronic infections, which are (to some extent) treatable.  I have been treating my condition for over 2.5 years.  I'm lucky to be working full time again, but it comes at a huge price of privately/secretly bearing the load of an invisible yet devastating illness.  My spouse is a huge source of support, but it is very difficult to always hide/cover up my condition at work.  It's even more stressful to know that even if I could open up to colleagues, most would not understand, as is the case with the general population.  

When my symptoms are flaring, I have no choice but to make excuses and duck out of work as much as possible to go home and rest.  I hate that despite my efforts to work as much as I can when I am physically able, I must still come across as lazy at times.  

Other than my spouse, the people around me either don't know, don't care, or don't "get it."  It is a heavy load to bear as a couple, and as the "bread winner" I'm lucky that so far I've been able to advance my career while still recovering.

My heart goes out to all of you, the symptoms of fibro/CFS have been life altering for me and the additional stress of not having a clear, well understood and respected diagnosis only poses further challenges.

[lvfrogs]

FurballsMom,
Yes, I am lucky. He understands the best he can. Unless you live it, you don't understand and if you are in a bad flare, it's just so much worse. Living alone maybe gives you the freedom to give in when you are just so worn out?? as compared to having to take care of others but then I also have the others to support me when they can. It's just plain hard!

[FurballsMom]

Wow, you're so fortunate that your husband is so supportive, even if he doesn't completely understand what you're dealing with.  I know I'm fortunate that I live alone since I already know that I wouldn't be able to actually live with anyone else with these issues.  Still, there are non-domestic situations that I avoid that I wish I didn't have to avoid because people who I know just don't get it.

[JaneDoe2222]

Yup, it pisses me off a lot. People can be so judgmental and critical when they haven't walked in your shoes. I despise others who bring me down to make themselves feel better. Young people (20-30YR Range) have it much worse I think..