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

[jenny-livingston]

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]

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