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.


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 2 years ago!

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

[disclaimer: received 168 days ago]

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