Complicated Emotions With CF
Last updated: May 2023
In a previous article I wrote about the mixed feelings and confusing thoughts I have had since the modulators – Orkambi, Symdeko, and Trikafta – came out. I know that my experience is privileged because I have access to the medicine and I was very healthy for 30 years before things changed. And I also know that my experience will be totally different from another middle-aged cystic fibrosis (CF) patient. That is one thing that is unique to CF: we all have the same illness, but we all have totally different experiences.
Hoping for miracles
Living past your life expectancy, or as one of my CF friends calls it, expiration date, is more complicated than it might look at first. Why would there be anything but gratitude and joy at celebrating another birthday? How could you be anything but thankful as you celebrate another holiday season with your loved ones? It is more complicated than that because human beings are complicated creatures who like to hope against hope on the off chance a miracle might happen.
When I first began taking modulators in 2018, I was hesitant to be too excited. I remember asking my family, “Will this keep working?” At that point, the modulator felt like a strong antibiotic. It will work, but for how long? And what will the side effects be?
As time progressed and I stabilized, I began to hope to plan. For many years, my plans only panned out about three months at a time. But as I rounded six months without IVs or hospitalizations, I started to wonder if maybe this really will work. Just as I became comfortable with Symdeko, Trikafta made its appearance on my doorstep.
Lung function and work
In a previous article, I talked about my experience when I took my first Trikafta tablet. I was hopeful for continued stabilization, but I wasn’t holding my breath for improved lung function. Pun intended. As the weeks and months ticked by, I saw that my lung function did improve, and it stayed at the new levels.
I remember telling my husband, “I’m going to be able to go back to work again!!” And I remember looking for work-from-home jobs. Soon after I clicked the search tab on a job search website, I realized that I wouldn’t be able to work in the capacity that I used to before I became sick in 2016.
I felt devastated when I realized that I wouldn’t be able to go completely “back to normal” after Trikafta. For years, I had incredibly high expectations that I didn’t filter through reality. Had I done that before I began Trikafta, my emotions would still have been complicated, but they would have been easier to process.
My emotions were complicated because I was grateful to be alive and stable, but I was also frustrated with my continued limitations. I remember speaking with my therapist and crying about the guilt I felt because I felt like I was taking advantage of this chance to live again. So many people don’t have access to modulators and so many fellow CF patients died before they had a chance to take it. And I felt like I was disrespecting them because I didn’t know what to do with my life.
Then I dealt with so much confusion about how to live life. The past few years had all been about surviving. I quit my job and stopped volunteering. My husband and I picked up our lives and left the places and people we loved the most so we could be closer to a transplant center. And suddenly, I wasn’t slowly dying. I didn’t know what to do and I was totally lost.
Finding myself again
After living life on what feels like a knife’s edge, it makes sense that I didn’t know what to do when I wasn’t in survival mode anymore. And I know I am not the only one. Many of my CF friends have voiced the same thoughts and emotions as me. The camaraderie we share encourages me and lets me know that I don’t have to have it all figured out.
It is okay to take one day at a time. And it is okay if I must re-learn who I am again. Who knows? Maybe I’ll learn something about myself that I never knew before.
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