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?

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