Niam shares what it means to live, compete, and push forward while living with Pachyonychia Congenita

As I stood barefoot on the pool deck, waiting for my heat to be called, I curled my toes inward, hoping no one would notice the thick calluses I could not hide. Before I even dove into the chilly water, I was already racing — not against the swimmers beside me, but against the quiet embarrassment of living with PC. 

PC, or Pachyonychia Congenita, is a rare genetic skin condition that makes simple tasks, like walking barefoot or standing, painful. My feet develop thick, permanent calluses on points that ache all day. There is no cure yet, only ways to manage the aching and keep moving forward.

I always thought I was different because of my PC. My dad has it too, but he did not know what his condition was. All he knew was that he was different. Without a name for his condition, he was isolated in a world where he felt like he was alone. Hearing his story has made me realize the importance of understanding and embracing what makes us unique. As opposed to him, I have been fortunate to understand my condition most of my life, and I am thankful for it. It has prepared me to face challenges with confidence rather than uncertainty. But for a long time, I struggled with what it meant to be different. Now, I know that being different makes me stronger and more resilient.

To live with PC is never easy; it has tested my body and brain in ways many never experience. But every day, I have learned to face it with grit and even focus on the good parts. Having PC has made me what I am today. If there is one thing to know about me, it is that I adore playing sports. Whether I am swimming competitively, throwing a football in the street with my older brother, or playing basketball at the rec center until I cannot walk, I have learned a great deal about myself through this condition. 

I have never been the type to get down easily. I am naturally positive and full of energy, but PC can make it hard to stay upbeat. Returning home after a day of standing around or playing basketball with friends is painful. There are some days when I can barely walk, but I have always tried to tough it out. Having PC has made me stubborn and strong, and yet weak in ways that I can never control. There are days when my body betrays me before my mind, and I have to sit with that frustration. But I have learned that strength is never about feeling weak. To me, it is about being present anyway, with humor, determination, and passion, even when it is painful. I have never allowed PC to define me, but I do not claim that it does not exist either. It has taught me to think pragmatically, but be myself, nonetheless.

Living with PC my whole life has taught me the value of resilience, compassion, and making the most of life, no matter the challenges. Some days, I should take a pass and sit out, but that is not who I am. I will always be the first one to play, even through the pain. I have learned that pain does not have to make me live my life in a shell; pain is just the background noise in a life that I refuse to pause. Whether I am quietly limping off the basketball court, walking barefoot on hot sand, or standing on the pool deck trying to hide my feet, the pain is and always will be there. It is a part of me. But so is the stubborn voice in my head that says, “One more?” Not because I do not feel the pain, but because I have learned it does not get to decide who I am.