Growing up, my motto was to live as normal of a life as possible. A couple of years ago when someone asked me, “What are some ways you can lead a normal life?” I honestly didn’t know how to answer.
All I had ever known was living life with cystic fibrosis — the routine of taking medications, doing treatments, and visiting the doctor at least once a month was normal life for me. What does someone’s life look like without a chronic condition?
Probably nothing like my monthly blood draws, annual chest X-rays, the constant paperwork needed to participate in a groundbreaking research study, or calls to multiple pharmacies to get the status of several prescriptions. As I’ve grown up, I’ve realized that maybe ‘normal’ isn’t what I’m striving for. Instead, my motto has become about finding balance.
One of my biggest challenges — and therefore biggest accomplishments — has been navigating college. I have been in college for six years, and am now getting my master’s in athletic training — and I am still figuring out how to take care of myself while juggling many other responsibilities. When I started undergrad in 2017, I moved to a completely new state where I knew no one and was not familiar with the area. I left my support system, and most importantly, I left the CF care team that had kept me alive for 18 years.
In the beginning of my college experience, I was trying to do everything every day. I was trying to find time to hang out with friends, complete clinicals, study for classes, and take care of myself. Suddenly, my health started taking a backseat. Prior to college, I had never skipped a dose of medication or a minute of treatment. Somewhere in between enjoying my newfound freedom and not wanting to miss a single memory with my friends, I started skipping treatments.
As my priorities shifted away from my health, the guilt started to set in, and my head began spinning with scary ‘what ifs.'
I knew deep down that I was navigating my health terribly and was choosing a social life over my physical well-being. During my second semester at college, I had my first panic attack. That’s when I realized I needed to integrate more routine in my life and find more balance.
The anxiety has made it extra hard to find balance. I can schedule a perfect routine, but it seems like nothing ever goes as planned. What if I developed a severe cough overnight, or have chest pain and can’t breathe? Now, I always plan for worse-case scenarios and have to learn to be flexible when things don’t go as planned. It turns out that balance is more about flexibility than it is about routine.
I learned that the hard way with my cystic fibrosis-related diabetes (CFRD). I was diagnosed with CFRD when I was 12 and I immediately hated it. How unfair to be born with a life-threatening condition only to get diagnosed with another one and have to manage both. So, I didn’t manage both, I just managed one and I ended up in the hospital. The conversation with my doctors shifted to prioritizing regulating my diabetes over my CF, which had become more manageable because of my miracle drug Trikafta®. It was a strange moment for me when CF — which had always been a focal point in my life — suddenly became secondary to the diabetes.
Being flexible, I’ve also learned how to be more understanding and open. I’m more accepting of my health conditions and willing to share my story with others. As a kid, I felt like I had my own little secret life. I kept my CF to myself, and some of my closest friends didn’t even know I had cystic fibrosis. It took five years of college for me to find balance, to find routine, to find acceptance. It took a lot of help from family, friends, health care providers, and my community, but I’ve finally reached a stage to where my health is back to being my number one priority. I enjoy sharing that part of my life now.
My most recent appointment was my best yet: my A1C was the lowest it has ever been and my PFT was in the 90s. Yes, that is a not-so-subtle brag, but it shows the huge benefit of finding balance and a flexible routine. I just moved to Seattle for an internship and despite the new environment and schedule, I feel confident that I will continue to find balance and prioritize my health. Of course, all of this is possible because of my care team, Trikafta, therapy, and the community around me.
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