Sunday, September 30, 2007

New YouTube Video: Go Ahead And Die! (Pirates Of The Health Care-ibean)

New cartoon video by The Foundation for Taxpayer and Consumer Rights says it all. FTCR is a non-profit, non-partisan consumer watchdog group. They "fight corrupt corporations and crooked politicians every day."

Health care crisis as depicted by pirates - music by Austin Lounge Lizards

This organization seems to deal mostly with events in California.

Thursday, September 27, 2007

Verbal Abuse: If You Can Recognize It, You Can Stop It

There's only one rule and it's simple, just "Blog Against Abuse". Any kind of abuse. The topic I've chosen to blog about is verbal abuse.

I first became aware of the concept of verbal abuse in the mid-1990's, I guess. I was wandering through the eclectic mini bookstore of the university where I matriculated and then worked for several years, and the book titled "The Verbally Abusive Relationship" by Patricia Evans just jumped out at me.

(There's a slide show of links at the end of this post, to Ms. Evans' books on Amazon - which are currently the best books available on the subject.)

I read the bulleted list (below) from the back cover of the book and answered 'Yes!' to every question when apparently just one 'yes' would have made the book required reading:

• Does your partner seem irritated or angry at you several times a week?
• Does he deny being angry when he clearly is?
• Do your attempts to discuss feelings of pain or emotional distress leave you with the feeling that the issue has not been resolved?
• Do you frequently feel perplexed and frustrated by his responses, as though you were each speaking a different language?

I was intrigued, so I bought the book. It starts with a quote that's oh-so-appropriate, by Robert Fulghum:
Yelling at living things does tend to kill the spirit in them. Sticks and stones may break our bones, but words will break our hearts...

It's a good quote, but verbal abuse is so very much more than just yelling or name calling. It's kind of an extensive subject generally, so I'm just going to tell you my story to introduce you to the concept of covert or subtle verbal abuse, and then post some good links for more information, if you would care to learn more about it.

So I bought the book and went home and devoured it. It resonated with me on many different levels. I highlighted my way through it the first time and then I talked to my counselor about it.
Note: Here marks the spot where I write publicly for the first time about my diagnosis of a mental illness, major depressive disorder (one more ICI to add to my list). I do so with the full awareness of the possibility (likelihood) of the stigma, both subtle and overt, that can occur as a result of this admission, such as prejudice and discrimination, fear, distrust and stereotyping. I'm taking this individual action in the hope of contributing to a change in public attitudes toward mental disorders, from fear, rejection and isolation of persons with mental illness to acceptance, understanding, and support.
See the Stigmabusters flyer for more info.

Back to my story. I was in individual counseling with a lady who was working on her PhD in Marriage & Family Therapy, Mary Jane. My dear husband (DH) and I were in marriage counseling with a man my counselor had recommended who was working on his LPC designation at the same school. He was a minister also and that's the best thing I remember about him. I talked to Mary Jane about this book and the revelations I was having regarding my marriage relationship while reading it, and she suggested I call The Minister and get an appointment asap to talk to him about it. Our next appointment as a couple was a week or two away, and I also wanted to talk about the book first without my DH being present. The Minister grudgingly granted me a special appointment and I went in and bared my soul to him, telling him that all along I had been thinking I had escaped the verbal abuse in my life, but after reading this book I realized I had just traded an overt verbal abuser for a covertly abusive one. The Minister took the book from me, flipped through it, and proceeded to repeatedly suggest to me that I was mistaken. After fifteen minutes or so of this I started crying hysterically, telling him "I KNOW this is what's happening to me because I feel it in my GUT!" He stopped arguing with me but never acknowledged the reality I told him I was living. He handed the book back to me and suggested that when I read a book I should take it more lightly and not do all that HIGHLIGHTING in the process. I didn't quite know what to say to this, so I just said I would see him at our next appointment and left.

Photo Sharing and Video Hosting at Photobucket

I never saw The Minister again. Turned out that he was a verbal abuser too, or he would not have insisted that I was not experiencing what I knew I was. (See Verbal Abuse and Therapy.) Mary Jane apologized repeatedly for referring me to him, and I continued my individual therapy with her. My DH and I did try marriage counseling the third and final time a few years later. It didn't take that time either. By that time I had been studying our relationship and how it affected me long enough to feel secure in my decision to leave DH. Turns out I was feeling the abuse in my gut literally as well as figuratively. After a couple years of therapy I could tell that all my DH had to do was ~sigh~ in that meaningful way of his, and my gut (colon to be exact) twisted every which way. The physical result of allowing this to happen to myself repeatedly over time were not pretty. Didn't smell very good either. I'll leave it at that.

Patricia Evans' book "The Verbally Abusive Relationship" opened a door and let a crack of light in for me. As the years went by and I learned more about verbal abuse the door opened wider and wider. This book not only defines verbal abuse, it tells us what to do about it. I admit I had to go back to the book and look up each incident and how to respond to that particular type of abuse at first, but in the long run it worked very well for me.

Since, in the majority of cases, people who indulge in verbal abuse are selective about whom they abuse, many people are surprised to hear that someone is experiencing on-going and periodic abuse from someone they know and have always seen as nice and friendly. “Nice and Friendly” is the persona of many an abuser. My ex is a great guy. Everybody will tell you so. Although many folks are as nice and friendly as they seem, some are not. Here are some resources to help you tell the difference: Patricia Evans' books "Controlling People" and "The Verbally Abusive Man., Dr. Irene's Abuser Pages and Dr. Irene's Bookshelf. Additionally, there are bulletin boards and moderated forums on most of the sites I've mentioned so far, and End Verbal Abuse is a Yahoo group that looks good. They offer a free e-book on boundaries in the Files section of this group.

Subtle controllers can be the worst of the verbal abusers because their behavior is so hard to pin-point and describe, and society hasn't blatantly labeled it as "bad." The subtle controller tries to keep the upper hand through deliberate deprivation of love, support, and respect for you. In healthy relationships there is no "upper hand" and emotionally mature people don't try to get it. Who knew? Not me. But that's a whole different post titled "Why People Put Up With Verbal Abuse" or "I Was Verbally Abused For Years And Didn't Even Know It!" These sites address that issue: Faith's Story, Dr. Irene's Victim Pages and Dr. Irene's Codependency Pages.

When I finally understood that I would never understand why my DH acted the way he did it was very freeing for me because up until that point his behavior had a very "crazy-making" (page 25-26) effect on me. When I stopped trying to understand WHY and just told him to "Stop It!" whenever he used a covertly abusive technique on me, it was all downhill from there. Reminds me of this wise old saying:
"When you see a snake, never mind where he came from." -W. G. Benham

Just get the hell away from him.

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"Getting Free"
by Ginny NiCarthy was the best book on the subject until Patricia Evans' book came out in 1992.

Dr. Irene's Verbal Abuse Site

Emotional Abuse Checklist

Verbal Abuse Precedes Domestic Violence
by Patricia Evans

Probe Ministries' Verbal Abuse site

Patricia Mitchell's Verbal Abuse site

Wikipedia definition

Bloggers Unite

Bloggers Unite

I will eventually write about the theory that abuse has something to do with the onset of Fibromyalgia.

Wednesday, September 26, 2007

Off Topic - Blog Against Abuse

"Bloggers Against Abuse
September 27th, 2007

The outcome we are after is to be part of the largest group of bloggers to ever blog about an important cause, all on the same day."

I found this Great Cause Challenge, Blog Against Abuse, the other day, and that's how I discovered Blog Calalog. What is Blog Catalog?

"Blog Catalog is the premiere social blog directory on the internet. Whether you're looking to promote your own blog or find blogs on various topics, this site is for you."

I was impressed with the "Blogging for a Cause" campaign, so I applied for membership on Blog Catalog (I think they should shorten the name to Blogalog). I really think it's going to be worthwhile. I've already learned a lot that I can apply to my blog to make it better and discovered more blogs to read and use for inspiration.

Of course I'm going to blog about abuse, verbal abuse to be specific, on Thursday 9/27/07. See you then,


Sunday, September 23, 2007

Dorothy Wall, author of "Encounters with the Invisible"

I checked her book out at the library and I read sections of it. I'm not so good with non-fiction unless it reads like fiction. It's an excellent book, but mostly it doesn't read like fiction. Ms. Wall is a scholar and a feminist and her book reads like it was written by a scholarly feminist.

Friday, September 21, 2007

The Best FM Site, According to Rheumatologists

"Fibromyalgia information and education from FM health professionals at Oregon Health and Science University (OHSU)"

The rheumys like this site the best because they say it's the most accurate.

I like this site because:

1. They have THE BEST information on exercise with FM. Don't let anybody tell you that you must start exercising aerobically immediately. That is a perscription for failure.

Always start your journey to fitness with a regular stretching program. The goal is to release some the muscle tightness which in turn will decrease the signals going to the brain. The next phase is to get the muscles stronger. After you are more flexible and stronger, you will be ready to begin aerobic or endurance activities.

2. They turned me on to the art of Frida Kahlo:

This self portrait is titled "La Columna Rota" (1944) (The Broken Column). It has been speculated that Frida had FM. Read about it here.

Thursday, September 20, 2007

Part Three of Blogging About Your Illness: The Benefits

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 brings to the human spirit a sense of freedom and joy. The spirit freed helps the body heal. Replacing fear with hope and darkness with light is the essence of modern body-mind-spirit medicine.”
Scientific studies tell us that art heals by changing a person's physiology and attitude. The body's physiology changes from one of stress to one of deep relaxation, from one of fear to one of creativity and inspiration. Art puts a person in a different brain wave pattern; art affects a person's autonomic nervous system, their hormonal balance and their brain neurotransmitters. Art affects every cell in the body instantly to create a healing physiology that changes the immune system and blood flow to all the organs. Art also immediately changes a person's perceptions of their world. It changes attitude, emotional state, and pain perception. It creates hope and positivity and it helps people cope with difficulties. It transforms a person's outlook and way of being in the world.

Alex Grey, Visionary Healing Artist, http://alexgrey.com/

In fact it is now known by neurophysiologists that art, prayer, and healing all come from the same source in the body, they all are associated with similar brain wave patterns, mind body changes and they all are deeply connected in feeling and meaning. Art, prayer, and healing all take us into our inner world, the world of imagery and emotion, of visions and feelings. This journey inward into what used to be called the spirit or soul and is now sometimes called the mind, is deeply healing. For healing comes to us from within; our own healing resources are freed to allow our immune system to operate optimally and that is always how we heal.

The artist is you. No training is needed. Just start blogging/writing. Your blog doesn't have to be public to help you heal.

Here are some important facts about art:
• Participation in artistic activities can have measurable physiological results such as, reducing stress, improving the immune system, and easing pain.
• Creating art gives a voice and language to unknown emotions, feelings and behaviors.
• Tapping into our creative energy can help a person to feel more alive, to gain inner wisdom, and to stay more completely in the present moment.
• When creating art, it uses the emotional and intuitive aspects of a person.
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. Arthur Frank 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.

I haven't read that many books on the subject, but I doubt that I'll ever encounter one that's a better example of a quest narrative than Gilda Radner's "It's Always Something".

At the end of the book Gilda says "Like my life, this book is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."

We should all hope for such insight into our illness and our lives.

Wednesday, September 19, 2007

NICIAW 2008--just keep it in the back of your mind for now...

Before you know it, it will time to start thinking about ICI Week for 2008.

If you want to put it on your calendar now... it's September 8-14, 2008.

How can you keep the momentum going?

I'll send out periodic blog posts about ideas and plans...

* Blog if you blog, write about it on you MySpace site, add it to your web page. Not sure what to write? Post one of our press releases and then just comment. Invisible illness is a topic that is timeless.

* Read your local papers, columnists, articles and more. Be sure to take note of what reporters tend to write about illness/pain/personal stories and contact them about your story and NICIAW. They may wish to do a story on you any time of the year, or put your story on the calendar for next September.

* If you see a great article on illness in your paper or a national magazine, be sure to write a letter to the editor.

* Add a signature file to your email any time. We have 9 versions or make up your own to fit any time of the year.

* Let your local support group leaders know about NICIAW by May so they can make plans early!

* Hand out brochures to friends, your doctors, your church, whomever! You can buy them or print them out here under "The General Postcard." We'll soon be updating it with the 2008 dates.

This could be helpful if you need to use handicap parking and your disibility is not visible--

Part Two of Blogging About Your Illness: Why Do People Write About Their Illness?

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 process of writing, we feel a responsibility to be painfully honest. I find myself in this situation, and I hope that my blog will open the door for a conversation with friends or family that I wouldn't ordinarily talk to about my illness in such depth. If it's important for them to know the whole story, and if they didn't read it in my blog, they wouldn't get it. It is important for me that all of my friends and family have the opportunity to know me better, if they want it. But for many, a primary aim of blogging about our illness is to achieve an emotional catharsis by writing and disseminating our thoughts online. Some theories about why this actually works will be in the next section, The Benefits of Blogging About Your Illness.

Probably the best answers to the question of why people write about their illnesses lie in the books by Arthur W. Frank, "At the Will of the Body: Reflections on Illness" and "The Wounded Storyteller: Body, Illness, and Ethics". (In the interest of honesty and integrity I'll tell you that I haven't actually read these books yet. There wasn't time to lay my hands them. What I'm going to say about them here comes from the book descriptions and the editorial and customer reviews on amazon.com. I should have time now to get copies for myself and check them out since I didn't get to this part of the presentation at the ICI Awareness Week conference!)

The first book is a "scholar's pilgrimage with illness”.

It's a memoir, an exploration of the events of illness from within. To illuminate what illness can teach us about life, Frank draws upon his own encounters with serious illness - a heart attack at age thirty-nine and, a year later, a diagnosis of cancer. He offers insights into what happens when our bodies and emotions are pushed to extremes. The book ends by describing the existence of a "remission society," whose members all live with some form of illness or disability.

Remission society. I'd say remember that term. We're going to be hearing a lot more of it in the future.

Frank's second book, "The Wounded Storyteller", is the collective portrait of the members of the remission society.

This book says that ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.

Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people Franks met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilities. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.

Frank identifies three basic narratives of illness: restitution, chaos, and quest.

Restitution narratives anticipate getting well again and give prominence to the technology of cure.

In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights.

Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. My blog strives to be a quest narrative. Gilda Radner's book is a quest narrative. More on this when I talk about the benefits of writing about our illness in the last section.

Part III: The Benefits of Blogging About Your Illness

Tuesday, September 18, 2007

Part One of Blogging About Your Illness: The Mechanics

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 permanently.

Truthfully, I just started blogging about my illness in April of this year. And I "just did it". I stumbled upon Blogger.com and it was free and relatively easy to learn. It was only when Lisa invited me to participate in this conference that I started researching blogging about illness, which is actually the same as writing about illness but in the weB LOG medium. Writing about our illnesses actually predates words: the cave people drew on cave walls about sickness. I'm finding the subject to be fascinating, and even helpful. I only wish I had had some of the information I'm sharing with you now when I started!

So, let's start with the basics: the boring but necessary nuts and bolts of blogging about your illness. Then we'll move on to more esoteric topics like why people write/blog about their illness and what the benefits of blogging/writing about your illness are. I'll be adding parts of my story and examples of others' stories that I've read about as we go along, to keep this from getting too theoretical.

I. What Are The Mechanics of Blogging About Your Illness?

For the many Web users who go online for health information, blogs present a more personal alternative to the many disease-related Web chat rooms, message boards and email discussion groups, which typically let hundreds or even thousands of registered users send emails to each other through a central server. I'm going to explain this as if you don't already know anything about blogging, i.e. begin at the beginning.

A. Where to "park" your blog - the following are the two main blogging platforms that I know about.
1. Blogger is free and it's pretty easy to figure out. Your blog address will have blogspot.com at the end of it. Some (hoity toity, imho) people seem to think there's something wrong with this, but I pay them no mind. I might have a blog that's all my own address eventually (example: www.theiciexperience.com instead of www.theiciexperience.blogspot.com) but that's way over my head right now.
2. Wordpress sounds rather more impressive than Blogger. It's also free but won't be as easy to use for a beginner. More stuff is going to be more complicated; that's just the way it is.

There's a very good, much more in depth explanation of Blogger versus Wordpress on The Fibromyalgia Experience. It's a little bit out of date already; this industry moves FAST. You also need to already know a bit about blogging and websites to understand it.

B. Track Your Blog - that means to see statistics such as how many people visited your blog each day/week/month, whether or not they were first timers to your blog or had been there before, how many different pages were loaded, and on and on. I'm using Statcounter because that's where Blogger sent me. Wordpress keeps its own stats.

C. Build Credibility
1. Get the HON Code of Conduct (HONcode) for medical and health Web sites.
2. Get the Healthcare Blogger Code (HCBC) of Ethics for Patient Bloggers. I have this one. This is a blogging code for healthcare professionals and patients. Read the full code here. I get to post the cool HCBC logo and an abbreviation of the actual Code, on my blog. Here’s the abbreviation: Perspective; Confidentiality; Disclosure; Reliability and Courtesy.

D. Design Your Blog (see Jack Neilsen's Weblog Usability Top 10 Design Mistakes)
1. Provide an author biography - users want to know who they're dealing with. It's a simple matter of trust. Anonymous writings have less credence than something that's signed. And, unless you're famous, it's not enough to simply say that Jane Blogger writes the content. Readers want to know more about Jane. Does she have any credentials or experience in the field she's commenting on? (Even if you don't have formal credentials, readers will trust you more if you're honest about that fact, set forth your informal experience, and explain the reason for your enthusiasm.)
2. Use an author photo - it provides a more personable impression of you. Your credibility is improved by the simple fact that you're not trying to hide. Also, users relate more easily to somebody they've seen.
3. Use descriptive titles - they're especially important for representing your weblog in search engines, newsfeeds (RSS), and other external environments so that readers can find you.
4. Publish regularly - Establishing and meeting user expectations is one of the fundamental principles of Web usability. For a weblog, users must be able to anticipate when and how often updates will occur. Pick a publication schedule and stick to it: daily, weekly, or monthly. Whatever schedule you decide on just try to stick to it. You can always change it, just let your readers know if you do.
5. Don't Mix Topics - If you publish on many different topics, you're less likely to attract a loyal audience of readers. People might visit a blog to read an entry about a topic that interests them. They're unlikely to return, however, if their target topic appears only sporadically among a massive range of postings on other topics. If you have the urge to speak out on two different topics, establish two blogs. You can always interlink them when appropriate.
6. OK, this is important. IF YOU DON'T TAKE ANYTHING ELSE AWAY FROM THIS PRESENTATION, TAKE THIS: Never forget that you're writing for your future boss. Whenever you post anything to the Internet - whether on a weblog, in a discussion group, or even in an email - think about how it will look to a hiring manager in ten years. Once stuff's out, it's archived, cached, and indexed in many services that you might never be aware of. Years from now, someone might consider hiring you for a job and take the precaution of snooping you first. (Just taking a stab at what's next after Google. Rest assured: there will be some super-snooper service that'll dredge up anything about you that's ever been bitified.) What will they find published under your name? Think twice before posting. If you don't want your future boss to read it, don't post it.

I have been forced by circumstances to come out of the "invisible disability closet". I also feel called to advocate for people with invisible disabilities, so I am pretty painfully honest on my blog. That doesn't mean you have to be.

E. Directing traffic to your site - if you want to get into this, here are some good places to start:
1. Post a comment on BlogHers - Living, Coping, and Blogging with Chronic Illness, here.
2. Use keywords - see The Fibromyalgia Experiment.
3. Get your keywords "tagged" in Technorati.

F. Lady Bloghers take note - As in the real world, there is always the possibility in the virtual world of being attacked simply because of our gender. There is one online attack in particular that has become almost synonymous with the harassment of women in the blogosphere: that is the attack of Kathy Sierra. Sierra got herself into the Technorati Top 50 writing about cognition and computers. Nothing racy or mean; the title of her blog was "Creating Passionate Users". The attacks involved specific, sexually graphic death threats posted on her blog and elsewhere on the Internet, and she took them very seriously. She lowered her public profile immediately; she closed down her blog (but left it open here, with her previous posts still up, and for accepting comments, until they reached 10,000 in number) and stopped speaking publicly. She also went public immediately with what had happened and in doing so caught the perpetrators. She said "If you want to do something about it, do not tolerate the kind of abuse that includes threats or even suggestions of violence (especially sexual violence). Do not put these people on a pedestal. Do not let them get away with calling this 'social commentary,' 'protected speech,' or simply 'criticism.'"

Robert Scoble, fellow blogger, in an article by Lynn Harris for Broadstreet, 3/28/07:
"It's this culture of attacking women that has especially got to stop. I really don't care if you attack me. I take those attacks in stride. But, whenever I post a video of a female technologist there invariably are snide remarks about body parts and other things that simply wouldn't happen if the interviewee were a man." In response to the threats against Sierra, Scoble no longer allows anonymous posting on his blog.

I'm not trying to scare you off from blogging, I'm just trying to give you a realistic picture of what's out there that you might have to deal with. I post my picture and biography on my blog, but I only specify the region where I live and I don't post my telephone number anywhere. I'm not listed in the phone book so I'm fairly confident that I would not be easy to find by any ol’ nut job.

Part II. Why Do People Blog/Write About Their Illness?

Monday, September 17, 2007


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 presentation here on my blog, and Lisa Copen, the founder of NICIAW, has invited me to be a interviewed on the Rest Ministries podcast this fall or spring. I'll keep you posted on that.

My apologies to "cj_Encourage" who asked this question during the presentation: "Why blog? Especially given the risks?" My answer was a terse "Next sections" - because that's what the next sections are all about, and at that point I still thought I was going to be able to get to it all. While putting my presentation together I had visions of no one being in attendance, and I wanted to have plenty of info to fill up the time, and to be on the transcript for "posterity"! There were 26 people in the NICIAW room during my presentation, and I sure thank you all for being there! I'll get the other two sections of my presentation up this week.

Sunday, September 9, 2007

Let's Lighten Up, Just For a Minute

Before I get down and dirty getting ready for the conference on Wednesday, here's some excellent invisible chronic illness humor from the Home on the Strange website by Veronica Pare and Ferrett Steinmetz. (Click on the comic to make it bigger.)

And check out the discussion of this comic in their forum. By Jove, I think they've hit a nerve here! OK, so the discussion isn't so light. Save it for later, when you want to get heavy. That's what I'm doing.

Thursday, September 6, 2007

National Invisible Chronic Illness Awareness Week Conference Presentation

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


WeB LOG Usability: Top 10 Design Mistakes


Female Bloggers Face Threats: What Can Be Done?


Blogging From Your Sickbed








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The Community for Women Who Blog


List your blog here so it will appear in the BlogHer Directory.

Bloghers - Living, Coping, and Blogging with Chronic Illness


A variety of blogs about illness, by women.




At the Will of the Body: Reflections on Illness by Arthur W. Frank

The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank

Narrative and the Cultural Construction of Illness and Healing by by Cheryl Mattingly (Editor), Linda C. Garro (Editor)



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