I remember the day I took my first two pills, it felt like ingesting magic beans. I hoped something wild and unexpected was going to happen to me. A couple of days and a few doses later, I coughed up all the excess mucus my lungs had been holding on to. It was like Trikafta went in there, stripped the walls of my lungs of all their sticky goo, and said, “Giddy up, girl! Cough it on up!” I was at the dentist, so rather than celebrating my sudden expelling of mucus, I was embarrassed by my crunchy, wet, unrelenting cough. It wasn’t until I got to the parking lot (continuing to cough up mucus) that I realized … this was the Trikafta at work. It was working. I’d never experienced such a mucilaginous release, even after treatments. This was something new. This was the beginning of losing my identity as a CF patient.
That was December 2019. It’s funny, I grasp periodically that I don’t even realize how much better I feel now. It’s as if I’ve always felt this good. How quickly we forget chronic illness and suffering. I suppose that’s by design, but it still always catches me by surprise. I have to consciously stop and mentally pinch myself as a reminder of how difficult “the before” often was.
“The before” was almost three decades of constant coughing, recurring lung infections, rounds of antibiotics, failed attempts to gain and maintain weight, two-week-long hospitalizations (AKA lock-up), health-related anxiety and depression, codependency with my sister and brother who also have CF (convincing myself that carrying the anxiety of their illness was also my moral responsibility), and the knowledge that CF would likely take my life one day.
“The after” has been the complete disappearance of my cough, being able to stop antibiotics because my lungs cleared themselves of infection, gaining and maintaining weight with ease, no hospitalizations in over two years, no longer worrying about my longevity, the realization that codependency was not healthy or helpful for any of us, and feeling optimistic that CF may not take me out after all. Oh, and the best part about “the after”? I became pregnant with twins and birthed a healthy boy and girl – Alder and Winslow.
I have to say it again -- I am so, so grateful for Trikafta.
But I do feel the twinge of grief at the loss of my CF identity.
Though I hesitated to write about this topic for fear of coming off as ungrateful or complaining, I do think it’s valid to recognize that part of my identity no longer exists as it used to. It’s been pared down, and whether a big life change is positive or negative, it’s still a change, and it still takes adjusting.
I can no longer relate to my younger self. CF was such an intrinsic part of who I was before I started Trikafta, and now, I sometimes hesitate to even think of myself as having cystic fibrosis -- Trikafta is not a cure, though most days it feels like one. I no longer do many of the day-to-day things that kept me healthy for 20 years (I was diagnosed at age 7, so I didn’t start any CF therapy until that time).
Although these changes are mostly all positive, such drastic change in such a short amount of time has left me reeling, trying to figure out who I am now that I feel so much healthier.
Living with cystic fibrosis is associated with a lot of negatives – poor health, frequent hospitalizations, shortened life span -- but there are actually a lot of positives as well. As with any kind of hardship or suffering, there are valuable lessons learned, life skills gained, and a number of silver linings. I’m losing the negatives, but I’m also losing the positives.
The camaraderie of the CF community is like nothing I’ve experienced before or since. There’s an inherent sense of understanding among those of us whose lives are (or … were?) impacted daily by CF -- patients, caregivers, care providers, family, and friends of CFers. It’s a special group of people with whom I could strike up a conversation and feel like I had something to contribute. I automatically fit in by virtue of my having cystic fibrosis. I no longer feel like I have much of a place in that community. I’m better. I no longer have to work so hard for my health. I no longer have to persevere through constant illness and frequent hospitalizations. My connection to the CF community has faltered as I’ve gained my health, and though I wouldn’t want to go back, I still miss that part of my life.
Strangely enough, having CF used to be a point of pride for me. I was living my life fully despite being sick, and there’s honor and pride in that.
Now I’m going through life, not as one of the few living with CF, but one of the many who are generally healthy and unchallenged by major health struggles. I no longer feel like a role model, or exceptional, or special -- now that my struggles have largely been removed. (I cringe saying “special,” but that is often how I was made to feel.)
I anticipate that some may shame me for sharing my feelings around losing part of my identity from losing my CF symptoms, because the opportunity I’ve been given to live symptom-free is a huge blessing and something that took decades of work to achieve for me and others living with CF. But I do think a sense of lost identity is something that is fairly prevalent, yet not often spoken about for fear of coming off as ungrateful or negative. I imagine that CF caregivers and providers maybe even feel some of this loss of identity, loss of purpose. When something as all-consuming as cystic fibrosis suddenly becomes much less of a problem to be solved, we get kind of frozen in place. What do we do now? Now that we’re no longer sick, or needed, or relied upon as intensely as before, what is our role? Who are we without cystic fibrosis?
Interested in sharing your story? The CF Community Blog wants to hear from you.