On December 13, 2023, I wrote this in my journal: What if I’m being killed by a miracle?

The “miracle” being Trikafta, an innovative cystic fibrosis drug that I’d been on for two years. Despite improvements to my physical health, it was extinguishing my will to live. For a portion of the time I was on Trikafta, a psychiatrist suggested that my symptoms sounded like those associated with bipolar disorder. In turn, I went on a mood stabilizer, which did nothing to regulate the unpredictability of my moods.

I just finished reading An Unquiet Mind, a memoir about Kay Redfield Jamison’s life with bipolar disorder. This passage struck me, as it perfectly captured the way I felt on Trikafta.

From the time I woke up in the morning until the time I went to bed at night, I was unbearably miserable and seemingly incapable of any kind of joy or enthusiasm. Everything—every thought, word, movement—was an effort. Everything that once was sparkling now was flat. I seemed to myself to be dull, boring, inadequate, thick brained, unlit, unresponsive, chill skinned, bloodless, and sparrow drab. I doubted, completely, my ability to do anything well. It seemed as though my mind had slowed down and burned out to the point of being virtually useless. The wretched, convoluted, and pathetically confused mass of gray worked only well enough to torment me with a dreary litany of my inadequacies and shortcomings in character, and to taunt me with the total, the desperate, hopelessness of it all. What is the point in going on like this? I would ask myself.

I quit taking Trikafta last April, and I feel more like myself every day. In reading that passage, I realized there’s a part of me that’s terribly sad to think about how tortured I felt for years, but I’m mostly grateful that I trusted myself and made the difficult choice to stop taking the medication.

Last month, the pharmaceutical company finally updated the prescription label after years of denying that it contributed to worsening mental health.

Here are some of the highlights. And by “highlights,” I suppose I mean lowlights.

Under WARNINGS AND PRECAUTIONS:

On the MEDICATION GUIDE:

At first, when I learned the label was updated, I felt oddly celebratory. However, I started digging through complaints to the FDA, and it pained me to see that the warning was too late for many individuals with CF. A medication that was supposed to give them a new lease on life contributed to its end.

Even in the CF community, there has been some division—as is sadly the case with most invisible mental health issues. Patients who didn’t suffer from neuropsychiatric side effects find it difficult to understand how others could have such a different experience. Yet this is the same argument I would use to explain how terrible the side effects were. If I’m willing to let go of the ability to breathe effortlessly, I must be in a pretty dark spot, huh?

Despite the physical setbacks I’ve had since stopping Trikafta, at least I’m happy. And after a lifetime of longing for more time on this planet, I realized that bonus years aren’t worth it if I’m “unbearably miserable and seemingly incapable of any kind of joy or enthusiasm,” to quote Redfield.

The bottom line is we’ve got to keep working toward an actual cure. While this drug and its counterparts have been miraculous for some, it has cost others their lives. Please consider a donation to the Cystic Fibrosis Foundation to inch us closer toward a world where physical and mental health can coexist.

I appreciate you.

>> https://fundraise.cff.org/GreatStridesATL/drew <<

Related Posts

• Lung Time, No Update (April 2025)
• 2 Legit 2 Not Quit (June 2025)
• A Shifting Miracle (January 2024)
• Back to CF: Day 5 (April 2025)