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Invisible Chronic Illness Awareness Week Was September 10-16, 2012

By HERWriter
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September 10 to 16, 2012 was Invisible Chronic Illness Awareness Week Hemera/Thinkstock

There's a certain irony in the fact that I didn't know that the week of September 10-16, 2012 was National Invisible Chronic Illness Awareness Week until it was over.

This was particularly ironic because I live with chronic fatigue syndrome, a condition that falls right smack in the invisible arena.

My first reaction to this gaffe was to make a mental note to be prepared for next year's Week. But I've since decided that being a week late is better than being a year late.

The small amount of exposure and promotion this Week receives from mainstream media may suggest that the chronically ill are a minority. But one out of every two Americans has a chronic condition.

More than 90 percent of these don't look sick, falling into the category of dealing with an invisible illness.

In a Sept. 13, 2011 article on Huffingtonpost.com, the Robert Wood Johnson Foundation reported that more than 133 million people live with chronic illness.

Many chronic illnesses are invisible. These include some better-known conditions like arthritis, diabetes multiple sclerosis, as well as chronic pain conditions such as migraines and back pain.

Other conditions that are just beginning to be known by the general public are fibromyalgia, Lyme disease, narcolepsy and chronic fatigue syndrome, also called ME and CFIDS.

The Pew Research Center's Internet and American Project in 2010 reported that 65 percent of Americans who search online for answers have a chronic condition, or more than one.

What are they looking for? They're seeking research and medical information, blogs and articles by other sufferers, and forums where they can talk with others in the same boat.

Chronically ill people have historically been isolated, misunderstood, neglected, overlooked and helpless. The advent of the internet has been life-changing for those who can type a keyboard, allowing the growth of a sense of community where none existed.

People with invisible illnesses have an unprecedented opportunity to become visible.

National Invisible Chronic Illness Awareness Week was initiated by Lisa Copen in 2002, and has grown with each passing year in the past decade.

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EmpowHER Guest

Thanks for the advise Jody, I did both cry and smiled in the end. I was wondering if you still check your editor@ncubator.ca it has been a while since you posted.
I too have to write things down. I was recently given a blank paged A5 hard cover book, in which I'm intending to use as my new memory base, considering I can play a fair game of Uno with myself. :( They really are rather handy. I recommend it to others dealing with memory difficulties or even loneliness in a matter of fact. A hard cover is also good in any situation of sitting or lying down without the need of something to lean on to write neatly.
Acquiring a pen from across the room is the difficult part now......

I am wonding about ways to celebrate this glorious new week.


September 29, 2012 - 7:54am
HERWriter (reply to Anonymous)


Sounds like you're finding some ways of filling your time and making things work for you. Well, except for that pen ... :)

I hope you have a good week.


September 29, 2012 - 4:52pm
EmpowHER Guest

I really wish I had found this out earlier. I don't know whether to smile because something like this exists for us or cry because I have to wait a year in bed to actually celebrate this to a true potential.
(and because I'm still young and seem to be the first to comment aka WOOOOO I'm FIRST to comment :) )


September 29, 2012 - 3:37am
HERWriter (reply to Anonymous)

I know what you mean, Emily. I wish I'd realized it earlier too. That went into my deciding to write about it even though I had missed it by a week. 

I thought it might help with the whole making the invisible visible thing, if more people knew about it, and might maybe search for it this time next year. And maybe my CFS brain won't prevent me from remembering next year and I can write about it again. Nah, I won't count on being able to remember. I'll write it down like I have to do with most things.

Hang in there Emily. You might well cry because of the long wait in between events for people with CFS. But smile too, because some things are starting to exist for us in very recent years. And more will come. 

Congrats on being the first to post a comment. :)


September 29, 2012 - 7:24am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.