I’m Krystal, and I’m 26 years old.

I was diagnosed with Von Hippel Lindau disease when I was 22. After my diagnosis, my new normal became life with kidney cancer and the numerous benign masses my body likes to grow, specifically in my brain, eyes, spine, and pancreas. With that came surgeries, appointments every six months, and a flood of mixed emotions.

A lot of times when I tell people about my chronic illness, the first thing they do is apologize, and that always makes me feel uncomfortable because I’m not sorry. This is my life. I’m learning to live and navigate life just like everyone else, and my chronic illness is simply one of the challenges I have to face along the way.

During my appointments, I struggle with scan anxiety, fearing what the doctors may discover and the unknown challenges that might arise from new findings. The lack of control I feel in those moments is emotionally exhausting.

I cope by being intentional and present. I try to take things one day at a time and do my best to keep a glass-half-full mentality. I focus on controlling the things I can control and not letting the things I can’t control, control me.

I’m not always successful, and there are days when I struggle to see the light at the end of the tunnel. But I’m deeply thankful for my loved ones who help lift me up when I can’t do it on my own. I’m also grateful for the VHL Alliance for connecting me not only to clinicians and resources that help manage my condition, but also to a community of fellow warriors who truly understand some of the struggles.