The One Thing About CFS

Wednesday, September 2, 2009

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

One thousand seven hundred eighty-four patients with CFIDS were asked this question on a survey conducted by CFIDS Association of America. This was question #22.

Jessie read the top ten answers and agreed 100 percent.

Here are the top 10 answers. To read the article, click here.

  1. 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.”

  2. 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.”

  3. 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.”

  4. 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.”

  5. 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.”

  6. 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.”

  7. 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.”

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

  9. 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.”

  10. 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.”

*MAJOR ANNOUNCEMENT COMING TOMORROW! :)


3 Reactions:

Annie January 31, 2010 at 7:47 AM  

Ugh.
I have had all of these thoughts like 1800 times. A very isolating experience for sure.

Lucy February 1, 2010 at 5:08 AM  

I particularly identify with number 4. Why is it when I'm feeling most terrible people walk up to me and say 'oh, you look so well!!' I almost feel bad for disappointing them (!)

Natasha Louise May 16, 2011 at 1:04 AM  

Hello, It looks like you don't really post anymore on here! But my heart stopped when I read this, I too, suffer from CFS! I have done since age 12 and I'm not nearly 22 so nearly 10 years, as much as I know its horrible, my heart feels glad to have found this blog even if you are no longer posting! Its like I found someone who can completely understand when most the world cant! Thanks for this, and also finding my blog, so I could find this! Natasha Louise x

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