Cystic Fibrosis Defines Me, and I'm OK With That


For the first time in my life, I’m alright with cystic fibrosis (CF) defining me. You’re probably thinking, what?! Luisa, are you claiming a defeat, are you succumbing to this disease? No, I’m pulling a Maxine Waters and reclaiming my cystic fibrosis, all of it. The good, the bad, the scary, and the uncertainty. All of it is part of my experience as Luisa – like I am Hispanic and I am a woman, I am also cystic fibrosis.

For most of my young adult life, I adopted an approach that despite CF, I was still living my life to the fullest. However, cystic fibrosis isn’t just how it physically manifests in my lungs or digestive system. It’s also how it has manifested psychologically and emotionally for me. And, it was becoming evident that my “despite CF” approach wasn’t encompassing or recognizing all of it. The insidious ways that, yeah, CF can hurt me and is hurting me.

Perhaps I’m predisposed to it, or perhaps this is me being human, but I have anxiety and I have depression. My anxiety is something that I’ve had since I was young, and I understood it to be a normal feeling. But, throughout university, my anxiety would spiral into depressions. And while, I had recognized depression and anxiety. My coping mechanisms were loosely addressing it.

It wasn’t until my final semester (and almost not graduating) that I finally recognized a strong correlation between my anxiety, depression and cystic fibrosis. This was a radical idea for me to accept, because not only did it feel like I was succumbing to CF, I thought I was weak and even believed that “I wasn’t doing CF right.” Whatever that means. Granted it took many months of therapy, a crisis outside my health, and a damn good psychologist. But, I slowly started accepting a new way to approach cystic fibrosis.

I remember sitting in my therapist’s office a few weeks ago, asking if it was possible for two opposing truths to coexist. And he promptly responded with, “Like an atom?”

And it clicked. The facets of me that I loved the most: my passion for living, for sharing with the world and letting the world share with me, for empowering people and feeling empowered by others. The passions that have driven and continue to drive my need to travel, to pursue a higher education, and to feel every moment with my loved ones. These passions are a part of me, just as much as they are a part of my CF.

Loving life with such an intensity isn’t serendipitous. Cystic fibrosis has certainly played a role in what I value and how I love. However, that has come from feeling emotions that are scary, and often without warning. Having to face disappointments from my own body, and realizing the contrasting want of my mind and the uncertainties of my body.

In understanding how deeply I felt about living and loving, I started grasping the extent of my disappointment. The anxiety I felt in potentially not being able to live, love, and laugh like I wanted. And suddenly the spiraling depressions I’d tumble in became not something I was ashamed of, but a natural consequence of all of it – the beautiful joy that I embrace and the terror in the unknown. They were becoming valid and I couldn’t ignore them.

I could reclaim my CF.

Reclaiming cystic fibrosis meant accepting all of it, that the beautiful part of my life is driven by the scary parts. Nothing I pursue, nothing I do is in vain. All the hours I spend doing treatments, the scary moments in accepting I need IVs, trudging through workouts with a needle in my chest. They meant something different.

Being afraid, being anxious, being frustrated now mean something different. They mean that I am working hard to keep pushing forward, even when it feels like a standstill or a rewind. These moments of perceived standstill were moments to reconvene and revamp my plan forward, bringing CF with me.

And something strange happened in reclaiming my CF. The turmoil, the weird, and the sad all did something that I had never expected it to do. It made me more human. Being open, unafraid, and sincere about my trials and tribulations with CF, anxiety, and depression… it connected me to people. People with CF, and people without CF. And, that’s not only beautiful, that is living.

So, yes. I am CF, because I am human.

This article was first shared here.

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