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Thoughts on Sharing About My Health in Social Media #NHBPM

Posted Nov 10 2012 12:53pm

Why yes, I do a lot of sharing about my health in social media.  What I share and how I share it has definitely been a "decide as I go" process because, by nature, I've always been a "learn by doing" kind of person.

Let me share this evolution with you as well as my current guidelines and rules for how I share about my health, my life and my relationships on my blog.

In the Beginning

When I started writing online in 2006, I did so with the intention of informing others about what was going on with my health problems and my quest to get diagnosed, treated and get better.  I used a blog as an alternative to sending out emails to everyone whenever I had an update to share.  I initially used the now defunct AOL Journals for this purpose.

AOL Journals wasn't what I would consider a true blogging platform like Blogger, which is what I use today.  To me, it had more of the feel of a personal journal versus a blog and the posts I wrote there were more like emails: updates about my health, musings about my life, funny forwarded emails and random pictures, sayings and thoughts. In that regard, I guess you could say it was similar to how people use tumblr today.

I'm pretty sure my AOL Journal was public.  But back then I didn't know or even care about how many people came to visit.  I'm not even sure if my posts there could be brought up using a search engine.  And if I am remembering correctly, I think the only comments I ever got were from my family and friends.

The Switch to Blogging

When I switched to Blogger in 2008, I brought this "blog as journal" point-of-view with me.  When I started writing in earnest in 2009, I didn't have a clear vision of what my blog was going to be about and my posts really ran the gambit when it came to subjects.  At that time I was really trying to develop the habit of writing on a consistent basis, so I often used prompts from NaBloPoMo , the National Blog Posting Month group, which meant sometimes I wasn't writing about my health at all.

As time has moved on, my blogging mission has become much clearer: Let's make life better, together, despite chronic illness.  So I went back and removed some of my earlier posts that didn't fit with my blog mission.  My writing style has changed from journaling to blogging thanks in large part to blogging courses like 31 Days to Build a Better Blog and Content Brew , health blogger  webinars sponsored by WEGOHealth, general blogging websites like the SITS Girls  and groups like the Chronic Babe Bloggers! over at the ChronicBabe forum.

I guess that is a very long-winded way of saying that, over time, I have narrowed my sharing to my health and those aspects of my life that intersect with my chronic illnesses.

How I Decide What to Share

I always, always, always write about my own personal truth.

Since the beginning, my mother-in-law has read my blog.  She is my most loyal reader and I love her for that.  Knowing she reads every blog post actually helps me in a really important way: before I hit publish, I use her to gauge the appropriateness of my content.  As time has gone on and my readership has increased to include high school friends, former co-workers and my neighbors, my "appropriateness compass" has grown.

I am pretty sure everyone my husband and I know are aware of my blog...and I tailor my sharing accordingly.

Knowing how many people my blog reaches, how it comes up in search engine results and how broadly I promote it on  FacebookTwitter  and  Google+  means I've developed a greater awareness of how far and wide my words can travel.  That certainly gives me greater pause before I hit the publish button!

Since I am currently permanently disabled and unable to work, I haven't faced the issue of social media and employment.  I guess I'll cross that bridge if and when I get to it.

I firmly believe that what I write here must be things I would be comfortable sharing with someone in a public place, things I wouldn't be horrified or embarrassed about if someone overheard what I was saying.  Which means I don't share all the details about my health and relationships here.

As much as I would like to vent, I choose not to publish my raw, unedited thoughts on my blog.  I prefer to use Twitter, and to a lesser extent Facebook, to share reactions and in-the-moment opinions. While my daily life does influence a lot of my blog posts, I choose to let events percolate in my brain for at least 24 hours before publishing about them.  Then I always strive to focus on the big picture, i.e. lessons or insights I've learned from what happens in my life and health care odyssey.

I always think twice, and usually three times, before I use anyone's name on my blog.  It's an easier decision when one of these things is true
  • the person has a social media presence (blog, Facebook, Twitter, website, etc.)
  • the person gives me permission to mention them in a post
  • using a name is really integral to the story I am telling

If I choose to mention family and friends, it is by first name only.  Most of the time, I prefer to mention their relationship to me (husband, sister, friend, etc.) rather than a name.

I do use my real first name, but I don't share my last name.  I share that I live in Los Angeles because it is a huge city and knowing that won't help you find me.

I trust that my readers are decent, honest people who aren't interested in violating my privacy or cyber-stalking me.  That said, someone did call me at my unlisted home number to complain about a blog post I wrote...and I am well prepared to handle this kind of situation if it ever happens again.

I only write about someone else's story if they give me their permission to do so, and then only if their story relates to or intertwines in some way with my own.  I do share stories about people I have known who are now deceased; in this case, I make sure I only share basic facts about them when describing the impact they had on my health journey and life.

My Rules for Sharing

In summary, I would say that these are my rules for sharing about my health and personal life in social media
  1. Don’t publish anything you’d regret seeing in print.
  2. Don't publish anything you wouldn't say in person.
  3. Don't publish anything you wouldn't want the whole world to know or see. 
  4. Remember what you publish will go on to live a life of its own, which means you can’t take it back or delete it later.



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