National Invisible Chronic Illness Awareness Week

Blogging About Your Illness

Sherril Johnson
Iillness Blogger

Sherril Johnson (SW Georgia, USA) is an active blogger on the topic of invisible chronic illness. Her blog is called "The Invisible Chroic Illness Experience." She is also the founder of Albany, Georgia Area Patient Advocate, and she acts as support group facilitator for the Albany Area Fibromyalgia Support Group, and for the Albany NAMI (National Alliance for Mental Illness) affiliate consumer support group.

Visit her websites:
Invisible Illness Experience Blog | Invisible Illness Experience

Blogging About Your Illness

Mod_LisaC: Welcome, everyone. Thanks for your patience with me for a minute as I figure out how to be "moderator." I am so impressed with everyone's technical skills around here. We are blessed to have you here.

Welcome to Sherril who is here to talk with us about Blogging About Your Illness.
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Sherril Johnson (SW Georgia, USA) is an active blogger on the topic of invisible chronic illness. Her blog is called "The Invisible Chroic Illness Experience." She is also the founder of Albany, Georgia Area Patient Advocate, and she acts as support group facilitator for the Albany Area Fibromyalgia Support Group, and for the Albany NAMI (National Alliance for Mental Illness) affiliate consumer support group.

sher: Thank you, Lisa. Hi everyone. Thank you for coming to my presentation, "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.

The blog address is http://theiciexperience.blogspot.com.

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. Get started at www.blogspot.com. 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. Look here to see for yourself: http://wordpress.com/features/. 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 at http://www.fibromyalgiaexperiment.com/2006/08/10/day-3-wordpress-vs-blogger/. 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.com 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 at http://www.hon.ch/HONcode/Conduct.html.

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 at http://medbloggercode.com/about/. 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.

Mod_LisaC: These are great resources. They really make you part of a great network as well as increase your credibility.

D. Design Your Blog (see Jack Neilsen's Weblog Usability Top 10 Design Mistakes at http://www.useit.com/alertbox/weblogs.html.)

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.

patty123: So, is blog another term for website?

sher: Blog is slang for web log. It's kind of like a diary, on the net. It is a website generally, specifically it's the blog type of website.

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 - http://blogher.org/node/19718#readmore.

2. Use keywords - see http://www.fibromyalgiaexperiment.com/2006/08/19/day-6-finding-keywords/.

3. Get your keywords "tagged" in Technorati. Go to http://www.fibromyalgiaexperiment.com/2006/08/19/day-6-finding-keywords/.

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 at http://headrush.typepad.com/creating_passionate_users/, 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.

Questions anyone?

p.j: I don't even journal- too hard to write long with wrist, typing is easier. Does blog mean you could not just blog for self and not have it there for others to read? Or yes, you could keep it all private for self?

sher: Yes, you could keep it private for self. You could give the blog address only to people you want to see it. You can also make it so they have to "sign in" to make sure no one gets there by accident.

cj_Encourage: Why blog? Especially given the risks?

sher: Next sections.

Mod_LisaC: I'd like to add that a couple of the reasons I blog for Rest Ministries is (1) to be able to just "be myself" and get back to some of the informality that existed when the ministry first started. (2) The words "chronic illness" show up in Google Alers (where you can be alerted of blogs or news with any keywords daily, whenever something new is posted.) So it gets the ministry good exposure online and more people to our web site.

patty123: Why might someone choose blogging over just a typical website?

sher: I think because blog software is made explicitly for that purpose, it's easier to do it that way. You can connect/link a blog to a regular website. I see lots of examples of that.

BevinUSA: Yes and [beware of] hackers also. My identity has been stolen three times and I use "clear temp history" and also "foot prints."

sher: OK. Thank you very much. I will look into that. I hadn't heard about it before. Thank you.

Karla: What is foot prints?

Mod_LisaC: We aren't sure... You may want to Google it or private mesage BevinUSA to ask

Karla: what's the best way to advertise your blog?

sher: I'm really just getting into that, but when I started my blog I sent it to everyone I knew, with a little intro. Then people with blogs and even websites of their own put my blog on their site so now I get traffic from them. I've been getting steady traffics from this event and I hope others will come from this... it's kind of a play it forward thing. I put sites on my blog that I like and people reciprocate. I'm just into free stuff so far, don't want to pay for any advertising.

Mod_LisaC: I'm also a big fan of finding ezines you'd like to write for and writing articles and then they will put your bio at the end. Your info gets out there and if people like your topic/writing style they will visit your blog too.

sher: Good idea, Lisa. I'll be looking into that, too.

Karla: how do you find your keywords?

sher: After I write my blog post, I look at it and I think, "what words describe this?" It's like that word association game. I use the thesaurus a lot if I can't think of just the right word. Put all the words you can think of in. Blogger remembers my keywords so I don't have to type them again, just click on them. You'll find repeating themes in your keywords.

Mod_LisaC: www.nichebot.com is one of the best that I use too. It has a small fee, but if you are seriously into keyword hunting, it's a great place to go (sorry for my 2-cents!)

sher: I very appreciate you 2 cents, Lisa!

Mod_LisaC: Do we have more questions? Does anyone here blog and would like to share how it's helped (or not helped) them cope with illness?

LRae: Can you let folks know on BlogHer if you have a chronic illness, but aren't necessarily writing about chronic illness?

sher: I think so. That one is more like a comment kind of thing--you're leaving a comment on this lady's CI blog. If you want to have your own blog on BlogHer, it doesn't have to be about illness. They're about all "women" things.

Mod_LisaC: I know a lot of people who like to have a web site but feel a bit overwhelmed by it all and also the expense. Blogging can literally be free, and it's pretty easy to use. Plus, search engines love blogs that are updated constantly, so if you have a message, it's much easier to get to the top of search engines with a blog than with a new web site.

Karla: Lisa, there is keyword tracker too, I believe...but I don't remember the site...that is why I was wondering.

Mod_LisaC: Yes, Keyword tracker is part of NicheBot. I think it uses about 5 different services for all kinds of reports.

Karla: I blog, but not about the RA yet...I will be soon, along with my journey of faith.

sher: Thanks for input, Lisa. Shall I try to get into the next section, which is Why Pople Blog/Write About Their Illness?

BevinUSA: I do not blog but I do keep an offline journal of each day so that I can see things that may trigger things with me and also my thoughts.

sher: Excellent. That's one of the benefits of blogging/journaling. It helps to clarify our thoughts.

patty123: So, is blogging where you say more personal/diary like things as opposed to a website which is generally more structured? As you can see, I'm still trying to figure out blogging vs. having just a plain old website. (I'm a techno-stupid baby-boomer)

sher: A blog can be anything you want it to be. Check out my blog for other blogs I like, and the other patient bloggers at Med Code. I'll start putting all kinds of blogs I like on my blog. There's just so much good happening out there!

Mod_LisaC: Yes, Sherril, I think one of the great things about blogs, is when you find one you like, they have some really good links to other ones on the topic. It weeds out a lot of stuff that we find in search engines.

sher: The good far outweighs the bad so far for me. I might change my mind if I had any death threats, though!

Well, I see time is up. I can submit my other sections as topics for next year! Unless you want me to go on.

LRae: I have a BLOG I'm just starting. It's helping process my life and get things out that I otherwise have trouble sharing.

Karla: My site is http://karlameachem.blogspot.com or http://EmpoweringChristianWomen.com

Mod_LisaC: I think we're going to go ahead and close since Sherril actually has quite a bit more info. We will be happy to have her back to explain more and we'll also be doing some podcast interviews with people (including her!) this fall and spring, so be sure to get the ezine to know the schedule (on any www.restministries.org page)

sher: http://theiciexperience.blogspot.com

Debbie: thank you Sherril for a lot of helpful info

Mod_LisaC: I'm sending Sherill one more question and then we'll close.

sher: You're very welcome. Thand you all for the participation!

cj_Encourage: I did some postings on message boards about Rest Ministries. Is postiing on boards less effective than a blog?

sher: I would think it would depend on how much work the board keeper (?not sure what to call that person) is doing to promote the board on the search engines.

Mod_LisaC: Thank you so much, Sherril. We appreciate your expertise, and also your passion about letting people know more about illness issues- both those of us who live with them and those who don't so they can better understand them.

sher: Thank you and the same to you. As far as I'm concerned you're the queen of the ICI awareness movement

Mod_LisaC: Remember, transcripts will be available and be sure to check out Sherril's blog. Sherril, can you give it one more time?

sher: Thank you everyone! My mom, brother and his wife are waiting in a restaurant bar for me to come to dinner. I'm typing the blog again... I'm messing up here at the end. I was trying to say I need to get to the restaurant before they get too tipsy!

The Invisible Chronic Illness Experience at http://theiciexperience.blogspot.com.

Mod_LisaC: Thanks everyone for coming. I've got to run and pick up my son from his playdate. Have a wonderful evening and be sure to come back for the next speaker at 5 pm pacific with Tom Robinson, a great guy who is a LIFE COACH for those with chronic illness (and he has illness, so he knows what he's talking about!)

sher: Thanks for coming, gotta run,Blessings~ I'll put my whole presentation on my blog in the next few days.