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  • “Does Educating Others About Your Disease Feel Like a Blessing or a Curse?”

    Posted by bailey-anne-vincent on December 10, 2019 at 12:32 pm

    QUESTION: Does educating others about CF feel like a blessing or a curse?

    I posted on my Instagram about fighting for accommodations as a Deaf person and the many ways in which I fail. Often, I’m tired of having to “fight the good fight” to get others to understand needs outside their own, and wish I could retract entirely. This is of course not how we create change in the world…. But it sure would be easier!

    Have you had to advocate for yourself this week? Do you resent it or rise to the occasion?

    There are no wrong answers!

    kadeem-m replied 4 years, 5 months ago 3 Members · 2 Replies
  • 2 Replies
  • jenny-livingston

    December 10, 2019 at 9:26 pm

    For me, it depends on the circumstances. If a friend or acquaintance is asking questions and I get to share part of my life with them, I love it! It genuinely brings me so much joy!

    But when I’m advocating for myself (or others) out of necessity – like fighting for access to meds, arguing with insurance companies, or trying to explain to someone (for the thousandth time) how politics and healthcare are intertwined and how vital it is to vote in ways that will ensure healthcare for the people who need it most — I absolutely hate it! It’s exhausting.

    There are few things in life that I both love and hate, but this is certainly one of them.

  • kadeem-m

    December 13, 2019 at 1:31 am

    Personally I feel that if I have to educate someone about Cystic Fibrosis, I have to give them a crash course. And where there are grey areas, they would ask questions in which results in me going deeper into a lecture syle of teaching. Personally, I find it a blessing in a sense where I am able to educate someone about a topic I know so well because of personal experiences. I may not be able to answer the hardcore questions about different mutations or chemical/protein imbalances that come with CF because I don’t have that science knowledge. But overall I am happy to provide new information to other.

    I guess the curse is when the individual(s) chose to pity or try to accommodate too much to the point where you lose all sense of independence.

    ~Kadeem Morgan

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