Why I Developed a Fear of Airplanes as an Adult With CF

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by Nicole Kohr |

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As a cystic fibrosis (CF) patient and advocate, I’ve been asked to travel to multiple out-of-state events, but I’m afraid to travel by airplane.

I haven’t always felt this way. I’ve only been on an airplane five or six times in my life, and most of those experiences were exhilarating. “I’m going to Walt Disney World!” I’d exclaim in the middle of the terminal. “I’m going on my honeymoon!” I shouted from the same spot 20 years later.

I was lucky. My mom and my husband — both of whom are far more well-traveled than I am — allowed me to maintain the naive mindset that airplanes were not germy death traps.

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I’m Worried Sick About My Family

All this talk about planes reminded me of “Come From Away,” which opened on Broadway in early 2017 and is scheduled to close on Oct. 2. The musical tells the true story of the 7,000 people whose flights were grounded in Gander, Newfoundland, Canada, on 9/11. The song “Me and the Sky” is sung by the female pilot, who explains why she has a complicated relationship with planes.

“Suddenly there’s nothing in between me and the sky”

When I was a child, my eyes sparkled with wonder when I was on an airplane. I got to spend hours of quality time with my family and watch TV. I got to look out the window and stare at the cool mountains, or better yet, fluffy clouds. Plus, I’m a very talented sleeper; I can sleep anywhere. What wasn’t to love?

“Suddenly everything’s changed”

My general anxiety, however, kicked into overdrive in my late 20s. Somewhere along the way, I adopted the idea that my square baggage — both literal and figurative — wouldn’t fit into the round hole that the airport allowed. For example, I felt like I wasn’t allowed to cough at the airport. I couldn’t bring certain medications on a plane. My port would trigger the metal detectors, and security would separate me from my family. Something out of my control would result in me getting kicked off a plane, or so I thought.

My paranoia wasn’t completely unfounded. On my trip to Disney World in 2018, which turned out to be my engagement, I had to abandon one of the suitcases that housed all my medication.

First, the luggage scanners flagged one of my prescription-filled bags as suspicious, and I had to wait for a special inspection. Then, the person making the announcements at the terminal told my family and me that I could board with two carry-ons because of medical needs. By the time she announced that all disabled passengers and their families could board, though, the plane had run out of carry-on space. I could only bring one suitcase on board, although both contained prescription medication and medical equipment.

My husband, my mom, and I had to stand on the bridge to the airplane, remove the contents from one of my carry-on suitcases, and shove them into whatever pockets were available. The flight attendants insisted I simply check the bag, but I couldn’t risk losing those medications.

“No one saying, ‘You can’t,’ or ‘You won’t'”

I’ve learned more about the dangers of airplanes since receiving my bilateral lung transplant in 2019. For example, I’ve always worn a mask on an airplane, double-masking in most cases, because cystic fibrosis demands a certain level of respiratory infection awareness. Unfortunately, the air on a plane circulates, so you eventually breathe in every other passenger’s germs. How helpful is a mask if the woman sitting 2 feet in front of you has bronchitis?

High altitudes can also be an issue for lung transplant patients, making it difficult for us to breathe and keep our oxygen levels up. A plane ride could potentially leave us breathless.

The female pilot in “Come From Away” knew she wanted to be a pilot since the age of 8. She faced many barriers and, like me, expressed her rocky relationship with airplanes. But the pilot went on to become “the first female American captain in history” while I, unfortunately, remain resistant to flying.

I realize airport security is necessary, and I’m sure the air quality on airplanes has improved drastically since my childhood. Still, the procedures implemented since 9/11 and the COVID-19 pandemic have added pressure to this already judgmental process, and statistics about airborne germs prove my new, immune-suppressed lungs are at risk of infection.

Hopping on an airplane would benefit me as a chronically ill patient, as traveling is a huge part of patient advocacy, but the germs and inconveniences exacerbate my fear of flying. Maybe one day I’ll get that feeling of awe again. Until then …

“Suddenly there’s something in between/ Me and the sky.”

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.


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