Blogging for National Invisible Chronic Illness Awareness Week

I'm blogging today because it's National Invisible Chronic Illness Awareness Week and one of the most important things for someone who deals with this type of illness is to get the respect and support that they need.

As a parent and caregiver, I constantly have to read about CFIDS to remind myself of what Jessie is going through. Understanding the illness is hard to wrap your brain around from a distance. First hand, I've seen what it does to a person's life - it's truly debilitating.

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The One Thing About CFS

“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! :)

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