Friday, April 13, 2012

3 days to my 'Bellaversary'

Bell's palsy people note the anniversary of their onsets.  Maybe more so when it doesn't go away.  Mine did, but I realized the other day that it's almost been 2 years.

Bell's palsy folks have a tight community.  Far more people look at the forums than post, but that is partly human nature and partly the adjustment period after onset.  That sense of community and the time people took to post what they'd experienced helped me through in ways not other information source good.  We take posts with a grain of salt knowing medical info and theories have to be verified before we adjust our medical care, but we learn through experience what works.

Each disease has a community now, with forums, blogs, advocacy groups, and in many cases actual resources available through major medical institutions.  But if people didn't take the time, none of it would be there.

Blogging can seem a bit silly to people who don't do it.  It can even be a bit risky, depending what types of peripheral issues your illness may bring (employment issues, disability issues, discrimination issues, etc).  But I'm so glad people do it.  My life as a sick person the past couple of years was so much better and easier for it (the term easy being very relative).

I've blogged much less about illness since returning to work.  I also paired back my disability blog a lot, mostly for fear of legal ramifications, but also for a smoother transition back.  My blogging didn't start during Bell's, as I couldn't have looked at a screen that long.  I started a good ways in to my Chronic Fatigue Syndrome diagnosis.  But I'm glad I started.  It's a small role, but a way to build awareness and advocacy.

Social media is really something; I certainly didn't imagine it would play such an enormous role in my recovery (which I'll describe more tomorrow; for now it's time to work).

But the BEST resource for Bell's palsy was this forum: http://www.bellspalsy.net/forums.php

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