Is It Our Responsibility to Educate Others About CF?

Is It Our Responsibility to Educate Others About CF?

I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be considerate and respectful of our circumstances, we must educate them about the intricacies of life with CF. The other: It’s not our responsibility to divulge our most intimate personal details so that others will have compassion and sympathy. It should just be common courtesy to learn on their own.

Like most things, I don’t believe it’s simply one way or the other. On my blog and in this column, I do embrace the concept of full transparency. I enjoy talking about my struggles with CF, depression, and anxiety. Other people trust you more and are more willing to learn when you’re transparent about your life. I get fulfillment in talking about my life. I enjoy it! It’s basically like having a diary that anybody can read, and hopefully, from reading about my life, people can learn from it or see things from a different, unique perspective. One of the biggest benefits of transparency is that it gives me more control of the conversation.

(Courtesy of Tré LaRosa)

However, I don’t believe anyone is obliged to fully disclose their innermost feelings in the hopes of garnering sympathy, or better yet, empathy. I firmly believe that we are all capable of learning how to empathize with others on our own accord without somebody else explicitly explaining it to us. We can seek out knowledge through the many resources available online. Plenty of writers write feverishly about their experiences and their realities. Through reading all sorts of books — novels and nonfiction — we can immerse ourselves in other human experiences and try to understand their emotions and their realities.

Life with a chronic — and invisible — disease inevitably teaches you some interesting and valuable lessons. It teaches you to be respectful of others going through a difficult time because it’s often impossible to know what that person is going through. Even an act of the simplest compassion — asking how their day is going or, if you’re in a deeper conversation, asking about their life experiences — can mean a great deal. I believe all humans just want to be treated exactly as we know we are: deep, vibrant, diverse beings that have feelings and moods.

Living with a chronic disease can be as mentally burdensome as it is physically. Someone taking the time to learn about our life can mean so much, as we are often expected to be always ready to teach others about our experiences. I’m interested to hear some thoughts on this from people that are affected by CF.

Those of you with CF, do you feel obligated to educate others? How do you feel about that?

Those who don’t have CF, do you feel like it’s rude to ask and so you try to learn in other ways? Or do you expect people with CF to educate you?


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