What is the one thing you’d like your family/friends to really understand about CFS?

[PlateletGal]

The CFIDS Association of America recently polled their members and asked them this question. To check out the most popular answers, click on this link below. Its a great list and one that you might want to consider forwarding to your family members and/or friends.


http://www.cfids.org/cfidslink/2009/090201.asp

[wonko]

This is a great list, thank you for posting.

While I have Lyme and not separate diagnoses of fibro/CFS, there is a lot of symptom overlap.

My favorite on the list is that I would like people to know that this is life-altering.  I think that states the impact concisely.

[lvfrogs]

Thank you for sharing this. I am going to send it to all my friends and family, because, although they say the understand, they don't.  I can't tell you how many times they tell me, I am so tired too. Well, it isn't the same. If they have CFS, then yes, it is the same, but since they don't have that, please don't tell me that you know how I feel.  It is so very hard to describe too. I try but it doesn't get through. Maybe this will at least open their eyes! Thank you!

[PlateletGal]

Since we have permission to re-post, I just went ahead and copied the list. I was one of the people who participated in the survey. For everyone here who isn't a member yet of the CFIDS Association of America... I highly recommend becoming a member. The more members the organization has, the stronger our voice is in Washington !

~PlateletGal



CFS is real.
“I’m not making this up.”
“My symptoms are very real even though you can’t see them.”
“I am sick with a real disease and I’m doing the best I can.”


It is very debilitating and disabling.
“CFS is as disabling as HIV, cancer and MS.”
“Staying at home is not a ‘fun vacation from reality.’”
“CFS is absolutely life-altering.”


The fatigue is very intense.
“It’s more than being tired.”
“My energy is very limited.”
“I understand you’re tired, but it’s not the same as CFS.”


Looks can be deceiving.
“I don’t look as bad as I feel inside.”
“Even when I look good, I feel awful.”
“Just because I look okay now, know that I’ll pay for it later.”


CFS is unpredictable.
“I don’t know from one day to the next how I’ll feel.”
“I have no control over how I feel.”
“I need to be flexible in planning things.”


It has nothing to do with being lazy.
“I wish I could accomplish more each day than I can.”
“Even simple things are often beyond my ability.”
“I’m not trying to get out of doing something when I say I can’t.”


Words don’t do CFS justice.
“There’s no way to accurately describe how bad I feel.”
“I still hurt as badly 20 years later as I did the first day I got sick.”
“Even when I don’t talk about it, I still feel sick.”


CFS is very isolating.
“I am often lonely and alone.”
“Life moves on without me.”
“Nobody understands what I’m going through.”


Your understanding is important.
“I am so grateful for my family’s support.”
“I am very lucky to have their understanding. It makes life bearable.”
“I still need quality life experiences and to be involved.”


CFS is not a choice.
“I don’t want to be this sick.”
“I miss the person I used to be.”
“It’s so sad to miss out on so many things in life.”
Consider sharing this list with the people in your life whose support is important to your well-being. Maybe it will start a dialogue that helps deepen their understanding of what it’s like to have CFS.

Kim McCleary
President & CEO
The CFIDS Association of America
September 2, 2009

[FurballsMom]

Thank you for this post.  I can use all the "tools" I can get just to help others understand what I deal with on a daily basis, as do all of us here on this forum.  

[Fantasma]

Thank you - This is an excellent, and eye-opening, list. It will be sent along to those closest to me.

[stubby226]

Thankyou for sharing the list.  I get so sick and tired of people telling me I look so good, I must feel better,  I feel like hell but because i look ok i must be ok.  I don't want to look bad just to justify my illness. but if i look good no one thinks i am sick.  any suggestions on how to deal with this.  Thanks for your input.  stubby226

[mogwai0]

Gosh, I'm not sure if I can pick ONE thing. Though it's all sort of related.

I'm tired (pun, harhar) of people saying they're tired too. It is not the same.
I wish I people would stop telling me to just get a bit more sleep and I'll be better-I already can sleep 20 hours straight and feel the same.
I wish people would stop thinking I'm being lazy and faking my symptoms just because I look okay, or because some days I have more energy than other days. I would give almost anything to be normal and go out and have a job, staying home alone all the time IS NOT FUN.
I'd love if people would stop telling me I'm simply depressed and if I went on antidepressants I would feel better.
Most of all, I think I would like if people would understand how stuck I feel in this body. I don't want to be like this.

[mogwai0]

I would also love if people stopped telling me that I'm imagining my symptoms into reality.
I don't think about my symptoms until I experience them, then that's when I get concerned..not the other way around.

[ParamedFlorena]

Thanks for posting the link. I think that what I most of all would like my friends, colleagues and family to know is that there ain't no day alike. I am not trying to get sympathy because we all have thing in our lives to deal with - all I want is a tiny bit of understanding when it comes to the difference between one day and the other.

... and fact: On my good days I'd rather talk about the weather and the clean air than the worst of the worst days in the pile.

[cjruz]

how about this is real,probably caused by parasites that are also infecting you but symptoms have not yet surfaced