This post is Part 3 in a series based on a presentation I recently did. The rest of the posts can be found here.
When I was first diagnosed, I lived in New Zealand. As brilliant as the medical treatment I got there was, NZ is a tiny country population-wise, and I knew a grand total of one other renal patient. A considerably older family friend whose circumstances are completely different from my own. Patient support groups don’t seem to exist there to the extent they do here, particularly for young adults.
After moving to the UK, I was initially fine, but when my disease unexpectedly came back, I found myself living on the other side of the world from my friends, family and previous medical team. The medical side of things was ok once I met my new consultant, but emotional support was a totally different story.
Fortunately, I discovered the National Kidney Federation (NKF) and in October 2014 I went to their patients’ conference for the first time. Being in this environment was amazing, virtually everybody else there knew what I was dealing with, because either they themselves, or somebody close to them, had personal experience. I met people that weekend who will be lifelong friends.
While I was there, I also found out that although most of the conference attendees were older than I was, there was another group too, a group which has since become our wonderful Young Adult Kidney Group. This was specifically for patients between 18 and 30, and every year, they went on a weekend trip in the Peak District! In September 2015 I joined them.
Before I attended the weekend, I was really nervous. I only knew a couple of other people who would be there, and large group gatherings aren’t really my thing at the best of times, let alone when they also involve “Outdoor Activities”!
I quickly discovered that I needn’t have worried. The “bunch of strangers” I was wary of turned out to be an extremely welcoming, inclusive group. Between us, we have a huge range of not only illness experiences, but also LIFE experiences. We are husbands, wives, parents, friends, sons and daughters. Some of us work or study, and some of us concentrate on our health.
As I said in my original post about this weekend;
We’re from hugely different backgrounds, but the one thing we have in common, and the thing that connects us all together, is our need to know we’re not in this on our own. There are others who not only understand at least some of what we’re going through, but are comfortable talking about it, even the really hard parts. The things we might not tell our healthy friends.
Over the last several years, I have watched our group change a lot. Members have come and gone, received transplants and started dialysis. Some are now married and have children. Sadly, some have passed away.
Regardless of what happens in our lives, our now considerably larger group still has the same purpose, to connect us with one another and glue us together through the shared experience of having had our health and bodies let us down.
Watching our collective response when something significant happens is amazing. Regardless of whether it’s a positive thing, like someone getting The Call, or whether it’s somebody struggling, needing help, advice, or just an audience to rant at, the replies appear almost instantly. People volunteering suggestions, practical help if they’re near enough, or just acknowledgement that nobody is ever alone.
As awful as it is when you encounter people who say or do insensitive things, the value of genuine friendships with people who really do “get it” cannot be underestimated. I now have close friends who just happen to be other patients. These friendships now go far beyond simply a shared medical condition. They’re the real thing, and I am incredibly lucky.
If you’re a renal patient between 18 and 30 years old and would like to talk to some other young adults in similar situations, please consider joining our Young Adult Kidney Group (YAKG), by either clicking on the image on the left or searching for “Young Adult Kidney Group” on Facebook. We don’t bite, and you’d be very welcome. 🙂