The ICI Experience:

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 blogspot.com, typepad.com, etc. will soon be the equiva...

Part I. Part II. Part III. The Benefits of Blogging About Your Illness Art has healing power. When I say art I mean all the arts: music, dance, sculpture, storytelling, journaling, painting, whatever we usually think of as the creative arena. Writing is art, therefore writing has healing power. I also find I’m making art on my blog in the sense that I use a lot of pictures on my blog posts. I use Flickr to find most of the pictures I use, but there is also PhotoBuket and probably many other sites where people post their pictures and if they allow you to use them, you can easily add them to your blog. It's also incredibly easy to add video and audio to your blog, for an all around super creative (and healing) result! Mike Samuels, M.D. is one of the leading pioneers in exploring creativity as an important part of every person’s healing journey. He says: "Physicians and nurses are discovering that art can have profound healing effects on their patients. Art b...

Part I. The Mechanics of Blogging About Your Illness Part II. Why Do People Write About Illness? As I mentioned in the first part of this presentation, writing about our illness is an age-old tradition. The cave people did it. It is simply being recast because of the internet. Here are some reasons people today say they blog about their illnesses: to clear my head - your mind gets cloudy when you get diagnosed, so you don't want to forget all the things you're hearing - and so you start to write them down; it gets hard to tell your story over and over again--it's easier to say to people 'Log on, and see where I'm at'; to create an info-portal for other people with a similar diagnosis; and to share stories about medical treatments with fellow sufferers. Some of us are comfortable with the thought of perfect strangers reading about our darkest fears, but we find ourselves unable to speak frankly with those closest to us. Yet on a blog, and through the proc...

As promised, here is the presentation I gave at the NICIAW Conference. It's in three parts. Thank you, Lisa. Hi Everyone. Thank you for coming to my presentation at National Invisible Chronic Illness Awareness Week, “Blogging About Your Illness”. I’ll stop for questions and answers after each section. If we run out of time, I’ll have some topics to suggest for next year’s conference! And if you have any questions that don’t get answered, feel free to email them to me at sherril@theiciexperience.org. I'll start by giving you a little background about myself. I was diagnosed with Fibromyalgia (FM) and Endometriosis (Endo) in 1989. I was diagnosed with cervical osteoarthritis this year. I was able to manage the illnesses and keep working full time until 2001 when I had to have surgery for the Endo, and complications from the surgery due to FM and "referred pain" that wouldn't go away have so far kept me from being able to return to work full time and per...

Especially good if you live with chronic illness, I think. When I couldn't hold a book up to read it, not even a paperback, my therapist suggested that I join the Library for the Blind and Disabled. That was a wake up call. First time I really thought of myself as disabled. That was in 2001; I was first diagnosed in 1989. For all you unbelievers out there--you know who you are--I continued to fully function for 12 YEARS after the original diagnoses, and I can assure you I actually had the illnesses for many years before the diagnoses. But I digress. The Library for the Blind and Physically Disabled is for--you know. There are local branches all over the place. Call your local library to find out where yours is. So, the preceding paragraph was for the purpose of relating the following paragraph to the point of this blog--invisible chronic illness. I'm researching for my stint as host of the Invisible Chronic Illness Week (ICIW) Conference on "Blogging About Yo...