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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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

6 comments

  1. Lisa says:

    “Education” I think means different things to different people. There is also a difference between education and noseyness – that is probably where your boundary is set. I write DNA books for kids and my current project is all about CF. I have been really shocked at just how much of the body is affected and how. Absolute hats off to you and everyone else who lives with it. I would say any penetrative questions would definitely come from those that really don’t know much about it theoretically – but you absolutely have a right to tell someone to back off.

  2. Trish says:

    As a CF Mom, I’ve always thought it important to educate others about my child’s struggles. But, I have always kept in mind, this is not my disease. The amount/type of information given should be left to the one fighting this disease.

  3. John Nash says:

    I have believed that people who keep secrets create additional stress in their lives. A wise psychologist suggested to me that the individuals may be engaging in what she referred to as,”healthy nondisclosure.” I have come to believe as you suggest Tre that their is a fine balance when it comes disclosing our innermost feelings and hopes. I like you believe, “we are all capable of learning how to empathize with others on our own accord without somebody else explicitly explaining it to us.” Working intimately with people living with CF has helped me appreciate the mentally burdensome nature of the disease and feeling responsible for educating others can sometimes add to that burden. I too live with a chronic condition and some day’s feel the weight of that burden and chose to keep my illness secret or engage in healthy nondisclosure. Thanks for sharing!

  4. Kenneth says:

    I used to be suggested this blog by way of my
    cousin. I’m no longer sure whether this publish is written by way of him as
    no one else realize such targeted about my problem.
    You are amazing! Thank you!

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