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    • #32033
      Christie Patient
      Moderator

      There’s no doubt that social media is a powerful force in the modern world. It can be wielded for good or, let’s not say “evil”, but, uh, NOT so good. Over the past few years, amid political polarisation, emotionally charged headlines, and controversial opinions, I have struggled to find my voice online. I am nonconfrontational by nature, but I want to use my platform for good. I ache to open up and share my family’s story about IPF and lung transplant with my (albeit, small) online following. I have benefitted greatly from others’ bold vulnerability on social platforms, and wish to do the same. Problem is, I am scared to open up.

      Have you used social media for advocacy? What’s been the most effective way to spread awareness of PF and/or organ donation topics? Do you ever encounter “internet trolls”? How do you find the courage to share your story?

      For some reason, it’s easy for me to write columns, and talk openly about this part of my life with you all in the forums, but when it comes to social media? No thank you. If you’d like to read more of my thoughts on this issue, check out my latest column here. And all advice is appreciated 🙂

    • #32276
      John Weitner
      Participant

      Hi Christie..

      No doubt  social media brings out the worst in people – especially those that do not post using their real names. I  use my real name on any forums or FB groups I join and so far I haven’t been attacked.

      I share your desires to increase awareness and especially agree with making organ donation the default option and you have to clearly opt out if you dont want to donate your organs.

      So I’m guess I’m trying to say – who gives a hoot if some are obnoxious on social media – your advocacy is very important and can accomplish much good.

      Thanks for your advocacy!

      John

       

       

      • #32374
        Christie Patient
        Moderator

        Hi John, Thanks for sharing your thoughts. I agree advocacy in any form is valuable. But you’re also right that people feel empowered to be rude by anonymity. Even those that don’t hide their identity can act terribly towards others from behind a screen. I am not someone who enjoys confrontation, and I also like to maintain privacy around personal matters, so it’s hard for me to engage on social media when it’s a cause close to the heart. Hopefully I find my courage.

        Cheers,

        Christie

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