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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

Here's some of what happened during 2012's National Invisible Chronic Illness Awareness Week.

A virtual conference was held featuring almost 20 speakers. The virtual conference has a 10 year history of offering support and practical tips to those who are chronically ill.

This venue was very appropriate for the chronically ill because those who are bedridden or housebound, who would not be able to go out to a meeting, would be able to tune in.

So often these people are left out of things due to the fact that they may not be well enough to go out, or lack a support system that might provide transportation or help getting into or out of a building.

The conference was ideal for those who could not sit up in a meeting, or whose multiple chemical sensitivities are too severe to be mixing it up with the general public.

The chronically ill often have very small circles of friends, making the difficult tasks of getting through a day or dealing with their health problems that much harder.

The virtual conference dealt with topics like caring for your children, or handling relationship problems that are unique to the chronically ill.

Suggestions were offered up as to how to function when getting out of bed takes all the energy you have, along with labor-saving techniques and ways to boost flagging spirits.

How do you handle it when the people you know don't believe there's anything wrong with you?

How do you protect yourself from well-meaning people who give you bad advice or want more from you than you can give? How do you deal with anger, guilt, fear, grief?

Bloggers have been writing for this special week, Twitter and Pinterest have also been used to cast more light on the struggles of those who are chronically, and invisibly, ill.

CNN Health featured "Images of Hope", and scheduled a follow-up chat on Facebook at http://Facebook.com/CNNHealth for September 21, 2012 with Lisa Copen as host, accompanied by co-host Sarah from CNN staff.

For more information on National Invisible Chronic Illness Awareness Week:

National Invisible Illness Week Features Virtual Conference This Week. Huffingtonpost.com.

Add a Comment4 Comments

EmpowHER Guest
Anonymous

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.

Emily.

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

Emily,

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.

Jody

September 29, 2012 - 4:52pm
EmpowHER Guest
Anonymous

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 :) )

Emily.

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. :)

Jody 

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.