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    • #14164

      QUESTION: Have you ever let sickness take over your personality?

      I have. After I first got diagnosed and finally had some sort of answers, I felt like going hard as an advocate was super important. I was super stressed out by symptoms at the time, and all the unknowns. I did the same thing when I was embracing my Deafness and trying to find a community who would “get me”.

      I operated like there was light at the end of the tunnel. As if there’s a solution for every problem. A “fix”. But, as most of you know, there rarely is a perfect end to each and every symptom, and eventually (at least in my case) we settle into this weird treading-water effect instead. Has anyone else gone through this?

      Do you feel it’s a positive or something we “grow out of” instead?

    • #14183
      Jenny Livingston

        This is something I think about often. Do I let my “sick” identity become too much of who I am? I recently wrote a piece about embracing CF as part of my identity. I truly accept and embrace the notion that it is part of who I am, yet I don’t ever want it to become ALL that I am.

        Regarding advocacy, I find it easier to be involved (either physically or online) when I’m feeling well. When my symptoms worsen or I’m struggling with my health, I tend to go silent. I kind of revert to that feeling of “treading water.”

        It always feels as if I’m walking a tightrope, never wanting to lean too heavily to one side or the other.

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