This week I learned a fun disease-related fact (oxymoron?)—one I can’t believe I’ve never heard in my lifetime with cystic fibrosis. I’ve written before that people with CF are saltier than average. To this day, the sweat test remains the most reliable method for diagnosing CF. Through a combination of chemicals and electric stimulation, sweat is collected (typically from the wrist) to measure its chloride level. Abnormally high chloride levels indicate CF.

Now, for the fun part!

A physician, Paul di Sant’Agnese, was working with CF patients in New York City during a heat wave in 1948. The scorching temperatures led to many of his patients being hospitalized for heatstroke and dehydration. According to this article, “Their small hands left salty white impressions on water glasses.”  The next year, in 1949, some of the same CF patients were again hospitalized during another heat wave, and Dr. di Sant’Agnese began experimenting. His astute observations led to the development of the sweat test, which is still the go-to test almost eighty years later.

I spent two mornings at Emory this week, both in the name of cystic fibrosis. On Wednesday, alongside Dr. Rachel Linnemann, Director of CHOA and Emory’s CF Care Center, I spoke to students at Emory’s School of Medicine. I talked about my lived experience with CF, while Dr. Linnemann provided the education, which led to my discovery of the history behind the sweat test. (Calm down, folks. It wasn’t that exciting.)

Throughout my many years in therapy, I’ve heard iterations of this phrase: “What’s buried beneath shame cannot heal.” As someone who carried great shame about my illness in childhood and adolescence (and I admittedly still struggle with it on occasion), I now welcome opportunities to speak candidly about how CF has shaped my life.

Given that my health has rocked my world more than usual lately, it was empowering to paint a picture of the disease for an audience of future physicians. I got to do this in 2024, too, though life with CF looked much different then. My physical health was significantly better thanks to “miracle medicine” Trikafta, but I was agonizing over whether I could tolerate the drug’s mental health side effects much longer.

Each time I talk openly about my illness, I show my residual shame who’s boss.

Friday was test day—the less exciting of the two mornings. I’ve been short of breath for about ten months now, and my lung function numbers have dropped substantially over that time. I got labs drawn, then did a cardiopulmonary exercise test (CPET)—all in a quest to identify what’s going on in the ol’ airbags. I should get results in the next week or so.

The blood tests were uneventful, but the CPET was no joke. I was hooked up to several monitors and wore a mask that pinched off my nose so I could only breathe through my mouth. Then I got on a treadmill that increased incline and speed every few minutes. INTENSE! I spent the rest of the day on the couch, which is my norm lately if I’ve done much of anything. But hopefully that will change soon.

In the meantime, I’ll try not to sweat it.

Ba-dum-tss.