As with anything, it turns out there is learning curve to using my personal blog as a platform for advocacy. It is a challenge that I am having to deal with the more lately, as the date for my son’s next surgery looms near.
This will be the first major hospitalization since I started chronicling his medical journey for the internets.  To me it’s a biggie, a jaw distraction.
My dilemma:
Do I blog our ENTIRE experience?
Do I upload potentially graphic pictures?
Do I owe my son his privacy or do I owe my readers a REAL glimpse into our lives?
I still haven’t decided.
As a mom, I struggle with questions How much information is too much information? and  Am I violating my son’s privacy?
But as a writer, I am constantly reminded that I don’t do it for myself, I write to help other families. When I think about how much sharing our story, be it through words or pictures, can help other parents and children I feel I am doing the right thing, for us.
Obviously it may not be the right thing for other families. But there is a strong urge to continue living our lives as transparently as possible. Only then will others truly realize what we go through — the good and the bad.
When all is said and done, I just need to find the fine line between his personal privacy and the call I hear to advocate for him and with him. Can I have one without the other? I think so. Surely I can find a way to advocate without plastering his surgical recovery pictures all over the internets.
How do you maintain your privacy when places like Facebook and Twitter are made to keep interested parties updated on your every move?
Aaron Kohr

2 thoughts on “Learning to balance privacy and the call of advocacy”

  1. Pingback: Anonymous
  2. Anonymous says:

    To solve rare disease we must sacrifice our privacy. Patient activism and grass roots efforts are fueled by transparency.
    Seth Wohlberg
    http://www.rechildrens.org

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