31 Days of CF: Too Sick for the Healthy, Too Healthy for the Sick

Photo courtesy of S. Langland

Day 6 of 31

This is Kristin Entler’s story:

Cystic fibrosis is lonely. Not in the way all diseases are lonely. Not just the 2 a.m. “hacking into couch pillows” to keep from waking my partner upstairs, in quiet seconds when I listen for breaths that ease in a circadian rhythm, confirming I haven’t woken anyone. The relief and bitterness that comes with isolation. 

CF is an island where the only visitors to beach themselves for the company are ones who don’t understand the dangers of the landscape. When I start collecting basins of water in high tide, some insist I don’t need to spend energy or time collecting water. They can’t fully empathize with the feeling of being this exhausted, not knowing what time the shoreline will recede. 

I’ve never been sick enough to require frequent hospitalizations. My most frequent cycle ran on a six-month lapse, from age 18 to 21. When I started Orkambi, my tune-up rate dropped to about once a year for IVs or hospitalization. I’ve been on Trikafta for more than a year and haven’t seen a hospital bed in two or three.

I am extremely lucky and I don’t take any of that luck for granted. But it creates an issue within the CF community where I get labeled as not being “sick enough” to form “sick kid bonds” with other CF patients, eventually leaving my primary venting to people who don’t fully understand what living with this disease looks like. 

Others with CF sometimes brush off my experience. The existence of other people’s issues doesn’t negate mine. Sometimes the chronic illness community forgets that. As a result, my lonely island finds only healthy feet tromping its sand. These visitors are welcome but sometimes, I need help from those who are familiar with the disease. Sometimes, I need some extra help.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.