Hats, perspective & kidney disease

In my thirty-three years on this planet, I’ve realised that alongside simply being Holly, I’m quite a lot of other things too. In no particular order I am; a daughter, a friend, an introvert, a Kiwi, a blogger and a committed lover of absolutely anything glittery. All of those things are hats I’m happy to wear, either because they represent something innate, or something I’ve chosen to become. They’re all little bits of what makes me who I am.

But how do I view myself in relation to my kidney disease? This hasn’t been present my whole life, and it definitely isn’t something I’ve chosen, it just suddenly happened ten years ago and I’ve had no choice but to deal with it.

I think it’s impossible to go through life with a chronic health condition and not have it change you, often significantly. How could it not, when you’re told there’s something wrong enough with your body that you’ll never be completely cured, you’ll need numerous invasive treatments and surgeries, and have to factor this condition into every decision you make. That is weighty stuff and it’s little wonder many of us sometimes struggle to reconcile our identity in light of it.

I think part of the difficulty comes when you consider the stigma and assumptions that often follow you when you disclose something like “I’m a kidney patient” or “I have kidney disease”. Even the words “patient” and “disease” have connotations that most of us wouldn’t want to identify with in daily life; things like illness, weakness and vulnerability. Even if we are sometimes those things, they aren’t all we are.

A conversation I had with some friends recently made me think really hard about the words I choose to use to describe myself in relation to my health, and why I choose to use them. I concluded that most of the time, at least in some circles, I say transplant recipient, because I am one, it’s something that’s influenced my life a lot, and it’s also something I regard as a huge privilege.

The term kidney patient is more complex. When I think of what I’ve experienced since I got ill, it sometimes makes perfect sense to resent this term. After all, it’s the reason I had my life derailed in my mid-twenties and had to reassess my entire future. I wouldn’t wish what I’ve experienced on anybody and I worry about things I never thought I’d have to. I had goals I regret not being able to accomplish. The fear of transplant rejection or disease recurrence is with me every day. Some former friends haven’t been able to cope with how much has changed and I know there’ll be people who’ll make assumptions or be judgemental once they know I’m “less” than healthy. If I look at my life this way, it’s no surprised I find myself starting to feel ashamed, belittled, anxious and diminished. As if I’m “just” a kidney patient.

Fortunately, this isn’t how I feel most of the time. I’m determined that the term “kidney patient” will not reduce me to a frail, passive recipient of medical care. Not only am I still standing, but I’ve also been lucky enough to have found a way to claim my “patient” status as something positive, productive and quite often extremely empowering.  I’ve taken up amazing opportunities, including many for paid work, on the basis that I’m a kidney patient, and therefore have experience, knowledge and perspective that others don’t. Far from making me feel vulnerable and passive, these are things I do with huge pride.

Something else I’ve discovered as a result of being a kidney patient is the instant connection it gives me with others like me. Whenever I meet another kidney patient, it often doesn’t take very long for us to realise that regardless of how different the rest of our lives might be, we immediately share a certain level of understanding and common perspective that we’d never have with someone on the “outside”. No doubt this is why some of us are such close friends. While we’re busy dealing with our ill health and uncooperative bodies, we’re also developing finely tuned bullshit detectors and a laser-like focus on what really matters, both in friendships and in life itself. I wouldn’t swap this clarity, or this bond, for anything.

I wouldn’t say I’m particularly proud to be a kidney patient, but I’m not ashamed to be one either. Like many other aspects of my identity, it just…is what it is. What I am proud of, however, is the perspective I have on it and its place in my life, the resilience it’s allowed me to develop and the confidence I’ve gained through what I’ve achieved and how I’ve learnt to hold my own, exactly how I am.

“Some painters transform the sun into a yellow spot, others transform a yellow spot into the sun.”
– Pablo Picasso