Wednesday, September 29, 2010

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

Source: InvisibleIllnessWeek.com.  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 an invisible 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 survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.

It took me more like a half hour to take the survey.  They have six proposed international symbols for Hidden Disability that you get to give your opinion on.  I think it would be good to have an international symbol and a card or something to carry with me in case I needed to quickly prove that I am disabled.

Laura Brydges, B.A. Sc., M.A., has won Canadian awards as a journalist, health professional, and media researcher. Now retired due to injuries resulting from a car accident in 2005, she wants to turn her experiences with disability into something positive for others living with disabilities.

Jennifer Martin, PhD. Industrial/Organizational Psychology, brings more than 15 years of experience conducting research for publication, consulting in government and private industry, and teaching at various universities and colleges in the United States.

Tuesday, September 14, 2010

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 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 feeling that we're helping others.

Blogging about illness has really come a long way in three years.

For one thing, blogs are now being turned into books.  Some call them "blooks."  Example:  Know Your Numbers, Outlive Your Diabetes by Amy Tendrich of Diabetes Mine.  Or sometimes blogs are created to go along with a book release.  I can't find an illness example where this has happened, so I'll use The Happiness Project because I think it's such a great and generous blog/website.  Gretchen Rubin wrote the book and has a blog about it too. 

Another new development is that there are "Blog Carnivals" for  different topics.  There are several blog carnivals on chronic illness/pain topics.  Entering a post in a blog carnival is a good way to get exposure for your blog, and a way to kind of force yourself to write on a schedule.  In the interest of full disclosure, I have never entered a blog carnival.  I hope that one day I will do that... I think I've been writing long enough now that I'm about ready to try writing on a short time deadline like the ones that are usually involved in blog carnivals (to me, two weeks is a short deadline).  Some examples of blog carnivals:  The How to Cope With Pain Pain Blog Carnival; Patients for a Moment Patient Centered Blog Carnival; and Chronic Babe.com's Blog Carnivals.

Speaking of ChronicBabe, did you know that Jenni Prokopy started that whole website as a little ol' blog?  It's true:
I started ChronicBabe.com as a blog, a hobby – a way to share my experiences with other young women. When I was diagnosed, I felt alone and confused, and the online resources I found sucked, frankly, so my goal was to share my perspective with others like me so they wouldn’t feel as alone as I did. This came about after years of working with multiple doctors, and coming to a place of acceptance regarding my illness.
Interview with Loolwa Khazzoom of Dancing With Pain

Another change that's been happening with blogs is expressed very well by Susannah Fox of the e-patients.net blog in E-patients, Cyberchondriacs, and Why We Should stop Calling Names:
"The phenomenon of using the internet to gather and share health information is now mainstream."
Our illness blogs are part of this phenomenon.

You might be asking yourself 'What exactly is an e-patient?' Cyberchondriac is pretty self explanatory (cyber + hypochondriac).

In 1999, Tom Ferguson, MD, came up with the term “e-patient” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.  The internet is a force that has allowed us access to much more information to help us with the four E's.

I think that people who blog about their illness are usually at some stage in the journey toward becoming an e-patient.  They are moving toward "using every aspect of empowerment, technology, and participatory medicine to beat the odds" of chronic illness, just like e-patient Dave did.  They are also providing a lot of the content on their blogs that is being used to help others on their own journey toward becoming an e-patient.

E-patient Dave de Bronart's blog is the epitome of "e-patient-ness;" he beat advanced kidney cancer and has a new career helping to transforming health care by using some incredible and so far horribly underutilized resources: the patient and communication!  Check him out when you have time.

Three years ago when I wrote about blogging about illness, I quoted Arthur W. Frank in Part 2: Why Do People Write About Their Illness, and in Part 3: The Benefits of Blogging About Your Illness.  (Note: In 2007 I wrote strictly about people who were writing/blogging about their own illnesses.  Another change in landscape of blogging about illness is that more people who are not the actual patient are doing it; an excellent example is Fibro World written by the mother/daughter, caregiver/patient team of Fibro Mom and Fibro Dot.)

Back to Arthur W. Frank.  For some reason I imagined him to be a wizened old man, I guess because such wisdom emanates from his work.  But he doesn't actually look that old. Or wizened!

In 2007 I wrote:
It has been said that from the era of the Internet a "new patient" would emerge, one who researched his or her ailments in the comfort of home, then challenged a doctor with the newly acquired knowledge.  (From 'Sick blogs' help afflicted share news, seek comfort.)  Dr. Frank and  says that sick blogs and patient pages are evidence that that moment has arrived, a sign that the new patient has gained an unprecedented sense of empowerment from her online community. Empowerment is definitely a benefit.

Frank's book “The Wounded Storyteller” also identifies the voice we all need to access in the battle with life-threatening or life-altering illness. When we recognize this struggle as an opportunity for journey, we can also recognize the call to help others currently in the "trenches" of illness, to bring about their healing. I definitely feel called to write and those are two of the reasons why: it helps me to access “the voice” I need to battle illness; and for me the writing itself has turned out to be an opportunity to help others with invisible illness which has led to other opportunities to help that don’t involve writing, such as facilitating support groups.

As Arthur Frank wrote, quest narratives are about finding the insight that comes as illness is transformed into a means for the ill person to become someone new. I think the big picture of what's happening to me, and what I'm chronicling in my blog is somewhat of a quest narrative. I'm in the process of figuring out what my life is going to be since it can't be what I originally intended, due to the monkey wrench of chronic illness which life has thrown me. There's a metamorphosis happening here and I am only able to see it because my writing in my blog, and in my local FM support group newsletter before that, has helped me reflect on it and recognize it.
My blog has come a long way in three years.  In 2010 I can add that my quest narrative, this blog The ICI Experience, has led me to a workable theory of the answer to the question 'Why me?' that most of us with illness ask ourselves.  It's a big theory and it's leading me on to another journey.  I've been pondering how to begin to tackle describing it on The ICIE.  It's going to have to be another blog post or series, and technically it's going to be a whole different blog, but I think the concept of living downstream will serve as a good closing to this series and to the beginning of a new one. 

Living downstream is a phrase used by environmentalists to make us aware of the impact our actions today have on our lives tomorrow.

This is The Parable of Living Downstream:
There was once a village overlooking a river.
The people who lived there were very kind.
These residents, according to parable, began noticing increasing numbers of drowning people caught in the river’s swift current. And so they went to work devising ever more elaborate technologies to resuscitate them.

So preoccupied were these heroic villagers with rescue and treatment that they never thought to look upstream to see who was pushing the victims in.

This film is a walk up that river. The river of human cancer.
~Sandra Steingraber
My theory is that that river holds a lot more illnesses than cancer.  My new journey (and blog) will be walking up that river with Sandra Steingraber, and many others.

Quest narratives in fairy tales end with the hero finding what they're looking for or achieving their goal.  Hey, it could happen!

 The Flint River in Albany, GA by Steve Robinson

Sunday, September 12, 2010

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 blogspot.com, typepad.com, etc. will soon be the equivalent of having an @aol.com email address or a Geocities website: the mark of a naïve beginner who shouldn't be taken too seriously."  
I wondered about this one three years ago, and now I'm sure it's just plain wrong.  I know of plenty of excellent and even venerable blogs that use a blogging service.

In 2007 I didn't write about blog plagiarism at all, because I didn't know about it.  If you care about your creative content it's a pretty big deal.   The US government has written a law, the United States Digital Millennium Copyright Act of 1998 (DCMA). This law protects intellectual property online, among other things.  When you publish a blog post, it becomes copyrighted without your having to do anything else.  Unfortunately, you pretty much have to enforce the law yourself if your content is stolen.

Stealing content is becoming more and more common.  In fact while I was researching for this post I ran a check on The ICIE through Copyscape and found that someone had stolen my entire last blog post and put it on their own blog word for word including pictures, with no attribution to me at all.

Next I used WHOIS to look up who the blog is registered to.  It belongs to a Joseph Eisenberg, in Israel.  My next step will be to contact him and ask him to remove my content from his site. Lorelle on WordPress even has a form letter I can use.  If Jakob doesn't respond within a reasonable amount of time, there are many other steps I can take.  All of which will use up time and energy that I sure don't have a surplus of!  And I wonder about the fact that this person is in Israel, where U.S. laws don't apply... 

Here are several other links to sites describing what to do if your content is stolen:

How to Protect Your Website's Copyright When Someone Steals Your Content at Time For Blogging

What to do When Someone Steals Your Blog's Content - Blog Plagiarism at ProBlogger

I hope I'm not scaring anyone away from blogging with all this talk about content theft and how to deal with it.  I suppose I could look at it as imitation being the highest form of flattery.  But I'm still going to pursue anyone who steals my content to the limits of the law.  And more, if necessary.  ProBlogger has some interesting ideas in the link mentioned above, and:

Hitting Content Spammers and Plagiarists Where It Hurts

A lot of people who blog about illness are actually sick and not able to sit at a desk.  I blog from a recliner with a laptop tray.  I found this tray at The Bed Tray Shoppe.  It actually looks pretty ergonomic and useful.

You probably want to avoid any setup that looks like this:

The blood is draining down from her hands and it will have a very hard time going back up.  Not good.

Come back next time for Part 2 of this series which will be about the more philosophical aspects of Blogging About Illness.  The fun stuff.

Monday, September 6, 2010

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

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 Blogging About Your Illness was my topic.  Three years ago researching this topic was hard going.  There wasn't much information available, so after writing about the mechanics of blogging, I wrote about "writing about illness."  Things have changed a lot in this respect; there's lots of info out there now on blogging as a specific form of writing about illness.  And I'm going to tackle it in my next post!

In 2007 at the Virtual Conference I was ready to talk (actually that year we were chatting in writing, not talking) about The Mechanics of Blogging About Your Illness (Part 1), Why People Write About Their Illness (Part 2), and The Benefits of Blogging (writing) About Your Illness (Part 3).  But people had so many questions about Part 1, The Mechanics of Blogging About Your Illness that all my time was used up answering them.  So I put it all up as a three part blog post where it remains today for posterity.

Tune in for the "Blogging About Your Illness Update" on my next post.

This year the theme for II Week is "Each One Can Reach One." The idea is to spread the word via Post-It notes.  That way even people who don't do computers can be reached.  Lisa has an informative video about it, among lots of other goodies, on the II Week website at http://invisibleillnessweek.com/.   Below is a slide show of notes that people are taking pictures of and sharing.  My favorite so far is the one on the Epsom Salt shelf at the store.  I have a shelf like this in my home; I can't abide being without my Epsom Salt!!!

There is also a free ebook of chronic illness tips available that looks totally cool - Chronic Illness Tips: 263 Ways To Do More Than Just Get By.  You sign up for daily email updates on II Week in order to get the ebook, and so far the updates are excellent and something I'm going to use to keep up with all of the II Week happenings.  There are A LOT of happenings and this will help keep me "in the loop."

The ebook has tips from a variety of Those Who Know - Lisa Copen, of course, Trish Robichaud, Jenni Prokopy, Maureen Pratt, Rosalind Joffe, Jennifer Saake and Jennifer Jaff, to name my favorites so far.  I expect after reading the book and listening to the Virtual Conference I'll have a few more favorites!  There are also a lot of links to even more info, in the ebook.

The topics range from relationships to career to faith to practical tips, and more.  The faith focus in the eboook is on Christianity, but there is also an abundance of secular information if that's not your bag.

One quote from Lisa that really struck me:
I have had days where I have thought, “If one more person tells me to go have a cup of tea I am going to scream! Tea is not going to help, people! I am tired of tea! My illness is bigger than tea! Don’t you get it?”  page 13
Yes Lisa, I totally get it.


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