CHAYENNE’S STORY

My Life, My Direction: The Path from AIH-PSC to a New Beginning

My name is Chayenne, I am 23 years old, and I live in Belgium. My life changed drastically when I was eleven. While my peers were busy playing outside and finding their way into high school, I was diagnosed with AIH-PSC overlap syndrome (Autoimmune Hepatitis and Primary Sclerosing Cholangitis). From the moment on, I was no longer just a teenage girl; I was a patient.

The Shadow of the Disease

To be honest, my journey with the illness was incredibly consuming. It dictated everything: what I could do, where I could go, and how I felt. For a long time, I felt like the disease was leading my life, rather than me leading it. The illness was in charge. Looking back on that path now, I feel a sense of regret that I allowed the disease to play such a dominant role. Of course, I was physically limited, but there were also aspects I could have controlled.

“I let the illness lead my life, but I have now learned that I am allowed to take the lead myself.”

The Turning Point: The Transplant

At the age of 21, the major turning point arrived: I underwent a transplant. That moment changed everything. The physical burden that had weighed on my shoulders for years became lighter. Thanks to this new chance, I obtained my high school diploma and am now studying at university. I can exercise again and do the things people my age do. For the first time, I feel like I am finally living my own life instead of just surviving.

Listening to My Body

However, life after a transplant is not a straight line upward. It remains a process of trial and error. It goes step by step, and sometimes I am forced to take a few steps back. But through this entire journey, I have learned a crucial lesson: listening to my body is not a luxury; it is a necessity.

I have learned that saying ‘no’ to others is actually saying ‘yes’ to myself, and that I never have to feel guilty about that.

What Really Matters

Despite the intense periods and the deep lows, this journey has also brought me many beautiful things. In the hardest times, you discover who is truly there for you. It has sharpened my priorities; I now know what really matters in life. I appreciate the small moments of strength and the people who support me through thick and thin.

I want to tell others in a similar situation that there is always a tomorrow, no matter how dark today may seem. My motto remains:

Hope is a light in your heart, giving you courage today and strength tomorrow!