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Who can share your story?
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?
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