The ICI Experience:

"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 about.com , from "My Fibro Story" on the National Fibromyalgia Association's Fibro Blog In 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 f...

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...

National Invisible Chronic Illness Awareness Week // Bloggers Unite I'm writing today as part of Bloggers Unite, which is an off shoot of BlogCatalog . Bloggers Unite is an attempt to harness the power of the blogosphere to make the world a better place. By asking bloggers to write about a particular subject on a particular day, a single voice can be joined with thousands to help make a difference in raising awareness of a particular issue, in our case, ICI. I've chosen to write about chronicity vs. disability because it's an idea that's been rattling around in my head for a few years now. Laurie Edwards, of A Chronic Dose wrote a similar post recently, titled Illness vs. Disability . In it she says "people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness." This is an important distinction. Her post goes further into the semantics of the situation, and she promises we'll hear more from ...

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week . This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people get to know about the event and how it can specifically encourage you. Hi, Lisa. Thanks for connecting with us here tonight at The ICIE blog. LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them. Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. LC: Often I refer to it as just Invisible Illness Week...

It's almost that time of year again - National Invisible Chronic Illness Awareness Week , September 14-20. Be sure to mark your calendars - it was a great conference last year, and an even better one is shaping up for this year. Plus, you can go in your pajamas if you want to. I thought the results of last year's Invisible Illness (II) Poll "Hate to Look Great?" were interesting and Lisa Copen generously shares all of her articles, so I'm reprinting it here. How do I respond to the "You look so good" comment? Well, I'm lumping the "How are you?" question in with the "You look so good" comment here, because the former is what people tend to ask me. "I'm hanging in there" seems to be my standard response (it's #1 - must be the standard for lots of people) , but I really don't feel like that response is satisfying. In the future I might try some of "The 54," or a variation thereof... maybe add ...

Lately I've been dealing with lots of animal issues in addition to my ICI issues: Foster dog Miley has FINALLY gone to a great home in the country where she won't get run over while she's out running fast, which is her favorite thing to do; fourteen year old best friend Bear is dying and we're doing all we can to make his last days comfortable; and I picked up a beautiful marble cat at the BP station yesterday and brought her home before she got run over in all the traffic (no photo yet). Our local Humane Society is in its beginning stages of development and they don't even have a building yet so I guess I'll be fostering this kitty now. I'm calling her BP - because of where I found her, and because I think the name Bonnie Pearl suits her. So when I found this great article today that links our pet's instincts with our ICI plights and also spreads the word about National Invisible Chronic Illness Awareess Week (September 14-20, 2009), I just ...

National Invisible Chronic Illness Awareness Week is held annually in September, and is a worldwide effort to bring together people who live with invisible chronic illness, and those who love them. This year it's September 8-14, 2008. Planning of four telephone seminars Sept 8-12 (M-F) where you can call in to listen and talk to the presenter are currently in the process. Last year I was a presenter. My topic was " Blogging About Your Illness ." It was a great experience, and there was a whole lot of worthwhile information available at the other presentations. I'll keep you posted on updates for this year's events as they develop. Love the new logo, Lisa!

Well, it looks like the 2007 National Invisible Chronic Illness Awareness Week was a great success. I decided kind of at the last minute to run up to Nashville, TN to see my nephew get sworn in to the Air Force during that week. So I participated from my hotel room, and I wasn't able to "see" any of the other presentations live because I was either hanging out with my bro and his family or putting in the driving time it took to get there and back. But most of the transcripts are already up! Transcripts of all the presenters. The transcript of my presentation, "Blogging About Your Illness". Turned out I had too much information to share for my presentation. I only got through the first third. The good news is, it was because of "audience" participation that I didn't get through the rest of my information. Lots of people attended, and there were lots of questions when I finished the first section. I will be posting the other two parts of my pr...

Handout for Blogging About Your Illness By Sherrillynn Johnson, author of “ The Invisible Chronic Illness Expericnce” Blog Wednesday, September 12, 2007 at 6:00 p.m. EST Chatroom website address: http://www.restministries.org/pro-chat.htm The following are the resources I have used in putting my presentation together: 'Sick Blogs' Help Afflicted Share News, Seek Comfort http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2006/06/14/MNGUAJ9MLM150.DTL WeB LOG Usability: Top 10 Design Mistakes http://www.useit.com/alertbox/weblogs.html Female Bloggers Face Threats: What Can Be Done? http://abcnews.go.com/print?id=3107139 Blogging From Your Sickbed http://online.wsj.com/article_email/SB111516490949023959-Ihjf4NplaN4nJumaIKGbKmJm4.html WHERE TO PARK YOUR BLOG (All free) Blogger http://www.blogger.com WordPress http://wordpress.com/ BUILD CREDIBILITY Get the Healthcare Blogger Code of Ethics http://medbloggercode.com/ ...

My time slot is: Wednesday 9/12 at 3 p.m. - 4 p.m. Pacific 5 p.m. - 6 p.m. Central 6 p.m. - 7 p.m. Eastern My topic is "Blogging About Your Illness".

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...

Hello All, I know I've promised to follow up on all kinds of things here in my trusty blog. And I intend to do so. Eventually. But I have just been invited to host an online seminar (webinar?) during the National Invisible Chronic Illness Awareness Week Conference. And guess what subject they want me to pontificate upon? "Blogging About Your Illness"!!! Isn't that just perfect? I'm going to take this as a sign that it's time to get back to the point of this blog (which is the invisible chronic illness experience, in case you've forgotten with all of my fun wanderings lately). Information about scheduling for the Conference will be posted here as it becomes available. Woo Hoo!

Do you live with an invisible illness? You aren't alone. National Invisible Chronic Illness Awareness Week, September 10-16, 2007 gives you a chance to feel "normal." The statistics about illness are staggering: + Nearly 1 in 2 Americans has a chronic condition + 96% of illness is invisible. 60% of the ill are ages 18-60 + The divorce rate is over 75% for the chronically ill + 70% of suicides have uncontrollable physical pain as a factor Sponsored by HopeKeepers Magazine, This week's theme is "Living with invisible illness is a roller coaster. Help a friend hold on!" It's a designated time in which people who live with chronic illness, those that love them, and organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent. Join us for this grassroots campaign to help spread the word that those with illness may look gre...

Let's face it... chronic illness can have its humorous moments if we look for them. You know you have a chronic illness when... * You understand all the medical terminology discussed on the T.V. show Grey's Anatomy. * When you hear the term "Club Med" you automatically think of the hospital. * You ask your child to open the "child-proof" bottles of medicine because your hands are too sore. * Your medical records have to be transported on a cart. * To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial. * Your favorite Oprah program is when Dr. Oz is on. * To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet. * When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life. * Your spelling has improved...

September 10-16, 2007