Kidney disease can be cruel. I didn’t invite it into my life and yet it impacts every aspect of it, including my perception of self – who I am, what I think about, what I look like and what the future holds. Living with kidney disease means we develop multiple selves, but despite the limitations my condition imposes, I’m more determined than ever not to be defined by it.

To look at me, you would think I am fine – well, even. It is no coincidence that people sometimes refer to kidney disease as an invisible condition. We function, work, and socialise. But inside, as kidney patients, we battle a chronic illness for which there is no cure.

The double-edged sword of seeming well

The appearance of wellness is a double-edged sword. On the one hand, it means we can lead a relatively normal life with work colleagues, family, and friends.

But it also belies a life dependent on a powerful cocktail of medication – each medication with its own set of adverse side effects, also to be managed – and, for me, dependence on daily dialysis, until I am fortunate enough to receive a transplant.

With kidney disease, over time, our body gets scarred, swollen, our weight fluctuates, we have fistulas formed in our arms or legs, or need a neckline (central venous catheter – CVC) for dialysis. These are physical reminders of what our body has been through, but in our darker moments, we cannot help but mourn the loss of the younger, fitter body we once had.

This isn’t vanity. This is part of the process of accepting that our life has changed.

How much do I share?

How much do I share? Activities that should be simple, like wearing lighter summer clothes or getting changed in a public changing room, can suddenly throw up new challenges which must be worked out as you go along. Each situation is different and there are no standard rules; you become hyper-aware of people looking at you as you are changing in the gym, or if your catheter is suddenly visible.

I have two dialysis lines: a peritoneal dialysis (PD) catheter and a CVC for haemodialysis. Managing these visible vascular access lines, especially in the summer when more of my body is likely to be seen, can be tough. You can tell yourself that it doesn’t matter, that you are still you, but this heightened self-consciousness can knock your confidence and self-esteem, and make you feel different in a way that’s hard to ignore.

I have two dialysis lines: a peritoneal dialysis (PD) catheter and a CVC for haemodialysis. Managing these visible vascular access lines, especially in the summer when more of my body is likely to be seen, can be tough. You can tell yourself that it doesn’t matter, that you are still you, but this heightened self-consciousness can knock your confidence and self-esteem, and make you feel different in a way that’s hard to ignore.

Battle scars of kidney disease

Therapy can help. I have recently started working with a specialist kidney therapist, and it has helped me process things that often feel disjointed and overwhelming.

Over time, I’ve learned to see things differently. These lines, scars, and changes to my body are my battle scars. They tell a story – one of resilience and survival. Proof that despite everything I have been through, I am still here, still alive, still working, still seeing friends, and still going out to have fun, and being fun!

Living with kidney disease means we develop multiple selves.

One self is the professional me, the person I am around my work colleagues and clients. Another self has friends, relationships, goes out and has fun (energy levels and dialysis regime permitting!). And my third self is my hospital self, where I am the patient; I have kidney disease; I receive dialysis, and hospital has become as familiar to me as the layout of my own home. I am a different version of me in all three environments.

I’m still relatively young, and I don’t know what is around the next corner for me. My choices might be limited by my kidney disease; but I am determined not defined by it.