Should I post about my disease on social media?

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Should I post about my disease on social media?

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited March 2018

    ‪This thoughtful article presents a balanced view on this important topic. The conclusion: As with almost any medical intervention, there are benefits and risks to consider.

    ‪ ‬‪https://www.curetoday.com/publications/cure/2018/h...


  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2018

    Thanks for posting this. I started a private Facebook group with only my closest friends that I invited. It really helped me get the word out, report on treatment, and saved me many telephone calls.

  • ceanna
    ceanna Member Posts: 5,270
    edited March 2018

    Thanks traveltext. Good read. I always default to the privacy side of the discussion. As the article points out, it's one thing to post about yourself and quite another to post about someone else. I often wonder if the person being described knows their diagnosis or even just their name is on a social media posting, or even posting on the BCO threads, by someone to whom they didn't give permission!!!??? Once it's out there, there's no going back.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited March 2018

    I only go on Facebook pages which are closed or private; this way my posts don't go my FB friends and family and I can basically say what I like. Most of the good and popular groups are closed and the discussion is free-ranging, but open and to the point. I'm on a couple of BCa and Pca ones for men and BCa ones which are mostly women. Quite a bond develops over time since real names are used. Technically, I have to say that BCO, with it's member diagnosis and treatment personal info available is better because discussion gets more targeted and medically useful.


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