To Share Or Not To Share

Thanks to Elin Silveous, I am pretty sure I pinpointed the reasons for not starting a blog sooner.  She tweeted this important article today from U.S. News & World Report.  While I am all for advocacy & awareness, it can be a fine line deciding what to share or not to share when it comes to my rare diseases.

I don’t blog for validation.  I don’t blog for support.  I have both in spades from many circles of my life.  It took many years of hemming & hawing before I found my voice or topic of choice to blog about.  For years, I wrote, but primarily directed at raising rare disease awareness to both a professional & personal audience. Outside that, I really didn’t write much.  I finally started because I realized I needed something to occupy my time, but as my rare diseases caused my quality of life & sometimes attitude to deteriorate I needed an outlet to express frustrations with my battle & sometimes lack of resources & direction.  I also found that for other women with my lung disease, resources outside the nonprofit that serves us were few & far between outside of Facebook or another social media vehicle.   Since cross-posting to Twitter & Tumblr, I’ve gained a small following of people who are interested in what I have to say which makes me happy, but that’s also not why I blog.

I started my blog selfishly to occupy my time & express myself while on medical leave from my current job.  To reconcile my current situation in a meaningful way & feel productive. Yet outside of that I could also see how this could be an easy & interesting way to network & keep appraised of health care trends & news.  Outside of my blog postings, my Twitter feed is primarily an easy way to collect articles I’d like to comment on eventually.  Yet I find important health news updates so it’s more of a constant stream of interesting content.  My Tumblr is an amalgam of items to keep my sense of humor intact & also find content that suits my personality & also perhaps some interesting blogs or insights into life with rare & chronic illness.  I have gone back & forth on my utilization of them, but yet I find them more pleasant & less of a time suck than Facebook when I evaluate them honestly.

I hesitate sharing my situation at all sometimes because what happens in my world is extremely hard & painful. I am well aware too of any employer or potential employer’s ability to find information on me.  I  do however, make an attempt to share what I feel may benefit others & help them over a similar stumbling block because I feel then that some good has come out of these ugly situations.  I also have never regretted my public speaking or projects I’ve worked on to raise awareness of life with rare diseases or educate people about the two diseases I live with. But I take calculated risks with that, risks I feel do pay off, but I feel comfortable with taking.

Before the days of social media, I had one important friend who taught me all about self-advocacy with her own walk.  Those were first-hand lessons I will never forget nor would I trade for any amount of online support for.  As my difficulties increased & my quality of life became harder to maintain, I was heartened by her courage & strength, as well as her candor.  Help in the way of drug treatment & research advances did not come in time for her. They did for me, and quite honestly for a period of time I had passing moments of survivor guilt over that, but I worked through them.   I found out through the internet that she had passed & that hurts me to this very day.  However, I was able to find closure in person through mutual friends & make my own peace with the situation.   So there is something to be said that while social media is a tool, and can connect people it can not replace social interaction & genuine connection with real people.

I keep this in mind as well because sometimes it’s very easy for me to hide behind the internet or research in a well-meaning but often misguided effort to protect or shield friends & family from the reality I live with.  I do my best to solider on & not complain or wallow in self-pity, but I too have moments of weakness. While I’ll admit to them here that is not something I feel I can always share with the world at large, nor do I always feel it’s up for public consumption.

However, that’s a fine line too but I’ve learned the hard way about oversharing & how it can backfire. I’ve had well-meaning people (I hesitate to call them friends because I question if they were at all, but certainly are not at the present time) share things about my personal situation on their Facebook walls that they were not given permission to make public & that hurt me immensely. But it taught me an important lesson about trust in the process.

So I dance this dance with the online world with as much grace as I can, I think some days I manage to walk that line better than I walk it in real-time & real life.  I often find that sometimes I can say things in writing that I fumble with in words, but that doesn’t mean I stop making those attempts to communicate face-to-face either.  Yet those who know me in real life & know me well, often know full well what I’m trying to say, often before it comes out of my mouth or out on a page.  They love me unconditionally which is something I feel people online are constantly searching for, but one can never really find that fully from a computer even with the multitudes of technological advances.  I can only find that through an inner circle of family & friends who walk this walk with me; & who love me with the good, bad, & ugly lived daily.




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