‘Disappear’: On Being Absent From Your Own Life

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by Nicole Kohr |

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In honor of the mixed reviews of the screen debut of the Broadway musical “Dear Evan Hansen,” I wanted to write about something every chronically ill teenager has taken part in: disappearing.

High school

In high school, I was voted most likely to be absent during the senior superlatives. I nominated myself. I won, and I was unironically absent for the yearbook photo. Consider it the peak of my self-deprecating humor.

I would disappear from school and extracurricular activities often due to respiratory infections and hospitalizations. Everyone at karate thought my name was Nicolette. When they’d ask where I’d been for the past three weeks, I’d panic and say I was a spy. The reality was, I didn’t want to be known as the sick girl. What was I supposed to tell them, the truth?

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‘One Day More’ (Until Discharge)

Moreover, I was a very Type A student. Like many of my classmates, I felt like I had to be perfect. Being absent from school almost half of the time threw a bit of a wrench into that plan and forced me to move all of my strengths into the public eye. This meant I had to be the best dressed, nicest, smartest, and most likely to succeed.

Despite my best efforts and inner confidence, I was surprised by how much my absence took a toll on my brand. Acting like Miss America tanked my FEV1, a measurement that indicates lung function, and still resulted in questions like, “You have mono or something, right?” Another favorite was, “Who’s Nicole?”

At the time, I felt like it wasn’t my place to comment on my lack of mono, lupus, or spina bifida. That changed in college.


I dyed my hair. My skirts got shorter, and my brand was renewed. I was ready to give my brand a second try, until I realized dorm life was anything but private.

“How am I supposed to trick everyone into thinking I’m healthy?” I’d think to myself. “My room is the only place I can hack up a lung.”

Thankfully, having roommates helped lower my addiction to being Miss America, especially because I couldn’t hide three nebulizers a day. They saw me at my most vulnerable and still branded me as something other than “sick girl” despite it. It was very encouraging.


The concept of being yourself always sounded like an after-school special, but it’s become a priority in my adult life.

Sure, being absent from school had its perks. I watched every TV Land show by the time I was 12. My grandma Kiki would treat me to homemade soup, McDonald’s, and movies. I got a lot of attention from family and healthcare teams, but complete transparency has allowed me to find complete happiness.

If strangers ask about my cough, I’m happy to share its origin story. Should I disappear from an event, I explain where I’ll be and for how long. When I’m asked to write a column about events related to my cystic fibrosis, I dig deep, knowing that someone out there can relate to my thought process.

The song “Disappear” from “Dear Evan Hansen” is one of my favorites. It’s sung by two teen boys who identify as outcasts, and it’s completely underrated.

Watching your friends attend a party while you remain isolated is difficult, but pretending to be someone other than yourself is worse. I encourage everyone to show people who they really are. Then, the need to be Miss America will disappear.

Disappearing With CF / Cystic Fibrosis News Today / A screenshot of Nicole's self-nomination for a senior superlative. Her post on Facebook reads, "MOST LIKELY to be ABSENT!"

Nicole’s self-nomination for “Most Likely to Be Absent” on Facebook in 2010. (Screenshot by Nicole Kohr)

Check back every Thursday to read more of my story.


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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