Redefining Life as a 27-Year-Old with Chronic Kidney Disease

Having a chronic illness at a young age can be an isolating and a life-changing, transformative experience. Claudia Downs shares her journey with kidney disease and a quest for representation of younger people with CKD.

“In 2021, I was diagnosed with stage 3B kidney disease. It came as a complete shock; I was only 24 years old and was being tested for coeliac disease, not kidney disease! Now at 27, I’ve reached stage 4 and am starting to think about dialysis and transplant. My biopsy was inconclusive, and doctors don’t know why my kidneys aren’t working. It’s hard to get your head around your organs failing, especially when there’s no clear reason.

I’m excited to have a fresh start with a transplant - hopefully it’ll enable me to crack on with my life and not have to think about my health so much. But a transplant is not a cure, and I’m aware that I’ll probably need to have multiple transplants in my life. It’s daunting to think about the future, so I do my best to focus on the now. In many ways, having kidney disease is a crash course in mindfulness: a disease characterised by uncertainty means you have to learn to be present. I was fortunate to access some counselling at the start of my CKD journey, which really helped shape my perspective. My counsellor told me: “if it’s something you can control right now, then control it. And if you can’t control it, you have to let it go.” She encouraged me to trust in my future self, and my ability to handle challenges when they arise. I return to that wisdom often, and it helps keep me grounded.

Living with kidney disease, there’s a lot of things people don’t see. I battle with fluctuating energy levels, a weak immune system, and chronic high blood pressure. On top of that I have to follow a very restrictive diet: low salt for my kidneys, and gluten free for my coeliac disease. The illness dictates so much of your life, from choosing your dinner to whether you can start a family. Most of that struggle is invisible to others.

When I was first diagnosed, I felt so alone. I’d never heard of anyone my age having kidney disease. I was the youngest person in the renal clinic by decades, and pitying looks from other patients only made me feel more alienated. There was (and still is) very little representation of younger people with CKD. I was desperate for films to watch, books to read, anything to help me make sense of my experience. Now, I’m trying to do my bit to tackle that lack of representation. I’m a fiction writer, and have started to incorporate kidney disease into some of my work. Recently, my short story ‘Friends with Failure’ was published in the online magazine Litro. It’s about navigating relationships as a young person with kidney failure, and it’s the first story the site has published on the topic. I try to write the stories that I would like to read; where people with chronic illness live full, nuanced lives.

When I’m not getting poked with needles or peeing into sample bottles, I’m throwing myself into my career as an editor, writing, going to gigs, travelling, or just hanging out at the pub with my partner and friends. CKD has also given me a much-needed kick up the butt to try new things. In 2022 I took up learning the drums, which I’d wanted to do forever. Overall, I am beginning to see the silver linings of having this illness. It’s taught me empathy, brought me closer to the wonderful people who support me, and pushed me to pursue my goals. It’s also made me brave and tough as nails!

To any young person with kidney disease reading this, I would say: you will have good days and bad days. You will be afraid for the future, and you will grieve what this disease takes from you. But your illness will make you resilient, compassionate, and probably funnier as well. And no matter how medicalised you might feel at times, you are still you. So find the things that make you tick, throw yourself into them, and let those things - not your CKD - define you.”