Showing posts from September, 2010

Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

Source:  I added the emphasis.
Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability”and now have launched aninvisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this…

Blogging About Illness Update: Why we do it, and what's new about it

"For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, specially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either."
Adrienne Dwello of the FM and CFS Blog on, from "My Fibro Story" on the National Fibromyalgia Association's Fibro BlogIn 2007 when I wrote about blogging about illness, my research was predominantly on writing about illness because I just couldn't find much information on blogging about it.  In the paragraph above, Adreinne has wonderfully summed up how blogging about illness is different from writing about it.  She's really good at that, summing things up.  Blogging about illness is all about community and the feeling…

The Mechanics of Blogging About Illness: An Update

This is part one of my  post for Invisible Illness Awareness Week.   It's an update to the series of blog posts I did for National Invisible Chronic Illness Awareness Week in 2007.

The three posts that I wrote in 2007 are all still pretty pertinent to the topic, but as I mentioned in my last blog post (links to the three 2007 posts are there), there's a lot more being written on blogging about illness now than there was three years ago.  So I figured an update was in order.  Plus Lisa Copen, founder of II Week, suggested it as a topic.

Part 1 of the 2007 series of posts was also about the mechanics of blogging.  In 2007 I referred to Jakob Nielsen's Blog Usability: The Top Ten Design Mistakes.  I still think it's  an excellent resource, with one argument about item  #10, "Having a Domain Name Owned by a Weblog Service."  Nielsen says:
"Having a weblog address ending in,, etc. will soon be the equivalent of having an em…

National Invisible Chronic Illness Awareness Week 2010: Each One Can Reach One

National Invisible Chronic Illness Awareness Week 2010
September 13-19

National Invisible Illness Awareness Week is upon us once again.  I'm thankful for that, because I know that Lisa Copen, the lady behind it all, has had a rough year since II Week 2009 - check out her "outrigger splint;" and she doesn't even mention the flesh eating virus she had to beat after the surgery!  The fact that the event is happening at all this year is a testament to her strength and resolve in this mission to increase awareness of invisible illness.

If you're a blogger and you want to participate with a blog post you can sign up at Bloggers Unite: National Invisible Chronic Illness Awareness Week 2010.  And if you're not a blogger you can see all the blog posts for this event in one place there.

My blog topic for this year will be "Blogging About Your Illness: An Update," per Lisa's suggestion.  In 2007 I was a participant in the II Week Virtual Conference, and B…