• Who can share your story?

    Posted by luisa-palazola on September 2, 2022 at 10:30 am

    After talking to a few friends with chronic illnesses, the conversation about parents and caregivers sharing their child’s medical journey came up. Most didn’t appreciate it when others shared their medical updates on public forums.

    Growing up, I absolutely hated when my mom would share online, especially if she would refer to my experience as “we”. I felt like it took away a bit of my autonomy. However, as I’ve gotten older and reflected on those experiences,
    I am starting to see how much my mom (and family) share in the experience. While they may not have CF themselves, they carried quite a bit of the pain as well. I realize it is a form of coping and I don’t mind when they share. Though the “we” is still a dilemma.

    What about you? Do you prefer to be private in terms of CF?

    aimee-lecointre replied 1 year, 6 months ago 2 Members · 3 Replies
  • 3 Replies
  • aimee-lecointre

    Member
    September 6, 2022 at 2:15 pm

    I’m pretty open about my health and experiences but I only share my experiences. I know my parents and other family are affected by my health but I’d strongly to prefer their experiences and how they are affected rather than sharing my story, if that makes sense

    • jenny-livingston

      Member
      September 8, 2022 at 11:12 am

      Aimee, yes! I think this is an important distinction and as I read your response, I realized that I feel similarly. I never mind if friends or family share a bit about what I’m going through, but I appreciate it when they do so in a way that is still respectful of my autonomy and privacy. For instance, if my parents want to mention that I’m in the hospital or dealing with health challenges, great! But I’d prefer that they briefly express their feelings about it rather than detail my specific struggles.

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