Are You An #ePatient, Still “In The Closet?”

196762_10150477974860019_6825465_nIf you know me, you know @IM4PBS.

My twitter handle copies the license plate I’ve had since I began working for PBS in 2002.

And in the beginning, I used an avatar on Twitter, to show my PBS pride.

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I’d change it up whenever Congress threatened to cut PBS funding, which eventually seemed to become a year-round affair. 

I’m no longer working directly for one of the best content providers the world will ever know, but IM still 4PBS, so I kept using the same avatar and general bio on Twitter:  

Successfully communicating in this new media frontier – forging & sustaining relationships – is a lifelong adventure, not for the faint of heart. Yippee-Ki-Yay! 

I felt my identity was safer, but still true, and required someone to dig deeper to find my #ePatient history.

Why would one be wont to hide behind an avatar and benign Twitter profile?  

Because I am a cancer survivor now living with other chronic conditions, byproducts of my initial treatments. Because I was unemployed and unable to find a job, any job with health insurance, here in the Neo-Luddite Triangle, for far too long, even after COBRA and unemployment benefits ran out. Because I don’t have a spouse with benefits. Because I am afraid survivors, like myself, are still open to discrimination, despite attempts to legislate against it (GINA, 2008).

I don’t think I am alone.

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I’d read your ink!

That’s what Lisa Fields [aka @PracticalWisdom] told me when we met for the first time IRL in the fall of 2011.

To be frank, I wasn’t really sure what she meant.

We had gotten to know each other on Twitter and were among the first group of #ePatient scholarship winners invited to attend the precursor to Medicine X ~ the magical and transformational Stanford Summit and Medicine 2.0 @Stanford: The 4th World Congress on Social Media & Web 2.0 in Health, Medicine & Biomedical Research.

We were roomies, and over the course of those three amazing days we savored the opportunities to get to know fellow #ePatients, doctors, researchers and designers. Each night we’d re-hash the days events and wake up to another day we didn’t want to end.

During those three days, and the ensuing 751 days following, I struggled with what might be the focus of my blog. Life… as an #ePatient? Life… as a long-term unemployed #ePatient? Life… in the Neo-Luddite Triangle?

I had too many ideas going in too many different directions.

On October 29, 2011, Lisa tweeted, Deb, Have you thought of starting a Blog. I promise I would read your Ink? Let’s get in touch soon. 

I didn’t have the heart to tell her I had started a blog six months before. I don’t recall what the impetus was. Or why I picked the Twenty Ten Theme. But looking back, 2010 was a year from hell and maybe I thought writing about it would help me get past it.

It didn’t. I couldn’t.

What did help was building a community of friends and colleagues on Twitter. Most people I know find it hard to believe friendships can be formed by tweeting thoughts and ideas in < than or = 140 characters. But they can, and I’ve formed deep friendships, many with people I’ve never met IRL. Facebook,  Linkedin, and to a lesser degree, Google+ became other relationship building opportunities.

Once I jumped in, social media became my lifeline… literally.

Nearly two years later, I’m standing on a higher cliff, psychologically preparing to make another jump….

[Disclaimer: I am deathly afraid of heights.]

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Happy Anniversary!

You registered on WordPress.com 2 years ago!

Thanks for flying with us. Keep up the good blogging!

[disclaimer: received 168 days ago]

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Hello world!

Welcome to WordPress.com. After you read this, you should delete and write your own post, with a new title above. Or hit Add New on the left (of the admin dashboard) to start a fresh post.

Here are some suggestions for your first post.

  1. You can find new ideas for what to blog about by reading the Daily Post.
  2. Add PressThis to your browser. It creates a new blog post for you about any interesting  page you read on the web.
  3. Make some changes to this page, and then hit preview on the right. You can alway preview any post or edit you before you share it to the world.
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