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


5 Comment

  1. You write so well Holly, putting into words and creating a framework that describes the life of many a kidney patient. The ups and downs and the bonds that link us and provide us with inspiration.

    Honoured to know you and share your company.

  2. Awesome words, truer than most readers would thing, yet only scratching the surface of a complex thing that changed life irreversibly. Had so many day, now you got your kidney you can get back to ….. I just smile sweetly whilst my eyes are screaming if only you **** knew mate, come here let me clock you one! At least I’ll never get that with a fellow travelers on that road! Speaking of roads, sometimes i feel out road is longer because we know we need to take more care, we know life is fragile, we often only have the gift of life because someone left their road early so there’s that inbuilt need to make ours count, for them! I might not be able to do all i wanted to do, but i become more determined to do what i can, not in a mad max way, much more measured & calculated! Risk analysis will always be part of my life! Would i wish i hadn’t had this condition, on balance, i think it’s made me who i am, taught me more about fighting clever, not giving up so easily or being pushed around. If ppl can’t cope, that’s their loss, not mine! I may not end up famous but if my life can help rescue a few washed up starfish along my road, I’ve all the time in the world to pick them up & tend to them as i know first hand what being abandoned means! It may not be the life i choose, it choose me, so my only talk is to walk it!

  3. Love this perspective. Im 21 years into a perfect match kidney. I live every day like it’s my last. I am truly grateful for each day. I try to not let my kidney disease stop me from living life.
    Very complicated in these covid times.

  4. As someone who had a transplant three weeks ago and someone who has got to 71 without ever going into a hospital overnight, your words are very profound. I sometimes forget people of much younger age suffer CKD. Please write more of your life.

  5. Your an inspiration. I don’t know what has stopped me from writing my thoughts but THIS is the inspiration I needed to break out of denial about FSGS. Thank you!

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