There’s No One Correct Way to Disclose Your CF

Although some people are very open about their cystic fibrosis, I prefer to keep my diagnosis to a small group of family and friends -- and that is OK. There is more than one correct way to live with CF.

| 4 min read
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Emily Apakian
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“What are those?” a friend asked me, pointing to my nebulizer kits resting on my medicine cart. A few friends and I had just finished watching “13 Going on 30” and were hanging out in my college dorm room. I took a deep breath, considering my options. Should I say they just help my lungs and leave it at that? Or should I explain the full breadth of my disease, cystic fibrosis?

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“They're for my nebulizer, which I use because I have cystic fibrosis,” I replied. I described my respiratory therapy equipment and living with CF. I feared that they would reject me as a friend if I revealed this aspect of my life. Despite this hesitation, I decided to share my disease with them and found that they were extremely supportive of me, asking questions and listening intently.

This happened three weeks into my freshman year at college. At the time, I thought this move was risky, considering I did not yet have any close friends, and these girls had no obligation to stick by me.

However, I chose to disclose my life with CF to them because I felt it was necessary to do so if I wanted to deepen our friendships. I wanted to cultivate trust and honesty.

Although I am not super open about having CF (at the time only my family members and close friends from high school knew about it), I appreciate when others ask me about it, as I enjoy spreading awareness and telling my story. Opening up to my college friends was a major step for me.

Sharing my story with my friends allowed me to grow in confidence. My roommates were always considerate of my health, as they were hyperaware of germs and allergens in our dorm room and consulted with me about anything that might jeopardize my health. Admitting to living with cystic fibrosis to my friends encouraged me to prioritize my health by performing my airway clearance treatments with due diligence, informing my care team when I felt unwell, and attempting to get enough sleep each night (though I did pull a few all-nighters).

I wanted to stay healthy so that I could continue to build these friendships, keep up with my studies (procrastination happened, of course), and participate in events on-campus -- like intramural basketball and Halloween costume contests. I was lucky that I never had any major sicknesses -- even though a dorm is a breeding ground for germs -- so CF didn't have to define all my relationships in college.

Through this experience, I came to understand that there is no right or wrong way to live with CF. Of course, health should be one of the primary focuses, but faith, loved ones, work, study, passions, and hobbies should simultaneously be given consideration.

I recognize that some are comfortable being public about their disease -- others share only with certain individuals -- and that is OK. It just depends on the person.

Personally, I was, and still am, selective with whom I want to divulge this information, partly because I am generally shy and introverted and partly because I don't want everyone around me to know my business. I rely on my family and a smallish group of friends, and I never felt the need to tell everyone I met about it.

My life with CF is uniquely mine. There is not one correct way to live with cystic fibrosis; after all, we all come from diverse backgrounds and have distinct experiences. Be confident, stay healthy, and do what you love.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Emily was diagnosed with cystic fibrosis at 3 weeks old. She graduated from the University of Notre Dame with a degree in chemical engineering and currently lives in the Philadelphia area. She is passionate about sustainability, enjoys watercolor painting and playing the banjo, and appreciates SpongeBob references and movie soundtracks. Her faith, family, and friends are what keep her motivated. She has participated in numerous clinical trials and Great Strides events, completed her Girl Scout Gold Award project on managing CF in college, and is a member of the Cystic Fibrosis Foundation's Community Voice. Connect with her on Facebook or Instagram.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.