Cystic Fibrosis News Today Forums Forums COVID-19 and CF Sick Culture: Are You Feeling More Understood or Less?

  • Sick Culture: Are You Feeling More Understood or Less?

    Posted by bailey-anne-vincent on July 31, 2020 at 12:42 pm

    In one word, how has this last month of pandemic made you feel?

    I ask because- though I know it’s a sticky subject and one I’ve written about it before (including Part Two of yesterday’s vent session video)- I am finding the abundance of health discussion online rather isolating.

    Essentially, the more people who say they don’t want to follow guidelines because of a medical condition, the more I doubt my own medical experiences and why we are told to follow guidelines (?) So many people are now using the words “medical condition” so loosely that term almost feels overused and misunderstood all together.

    Are you feeling MORE understood right now (with more people wearing masks, isolating, and so on) or LESS? How has this impacted your social health?

    jenny-livingston replied 3 years, 8 months ago 2 Members · 1 Reply
  • 1 Reply
  • jenny-livingston

    Member
    July 31, 2020 at 4:24 pm

    In one word? EXHAUSTED.

    As you mentioned in your reply to my post, it seems these conversations are happening so frequently. Every single day, whether in person or online, I find myself defending or explaining things I never thought I would have to.

    When this all started, I had people reaching out to me saying things like, “I know that aspects of this aren’t new to you. I’m sorry you’ve been experiencing these things for so long, they’re really difficult.” There was so much empathy and I felt more understood than ever before. But before too long, those same people were saying things like, “These circumstances are unlivable. Let the vulnerable isolate, while we get back to normal.” (Well, they’ve been saying a lot of other, flat out unkind things as well. I’m trying to keep it nice here.)

    I’ve wondered, what happened to that empathy? Why am I being told that my lived experiences aren’t valid? It’s been such an emotional roller coaster. Exhausting truly is the word that sums it up best for me.

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