A few days ago I wrote about how I have brilliant friends who have never made me feel “less than” for having been sick, and who, even though they’ve never been where I am, have just kind of “got on with it” and encouraged me to do the same.
What I didn’t mention in that letter is that I also have another group of friends. These ones do get it. They get it because they’ve been there. They’re sick too.
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 as a result of this, I knew a grand total of one other person with kidney disease. A considerably older family friend whose circumstances are completely different. Patient support groups just do not exist there to the extent they do here, particularly for young adults.
After moving to the UK, I was initially fine, my disease was “in remission” and I had reasonable cause to believe it might be years before it came back, if indeed it came back at all.
And then it did. I suddenly found myself living on the other side of the world from my friends, family and previous medical team. The medical side of things was easily fixed once I started seeing a new consultant, but in terms of emotional support, things weren’t great.
In the middle of 2014 I discovered the National Kidney Federation (NKF). Not only are they a charity that exists specifically to help renal patients, they have in-person events that patients can attend, with the intention of meeting one another! Yes please!
In October 2014 I went to Blackpool to the NKF Conference for the first time.
Being in this environment was amazing. Virtually everybody else there knew what I was dealing with, because 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 found out that although most of the conference attendees were older than I was, there was another group too, Young NKF. This was specifically for patients between 18-30, and every year, they went on a weekend trip in the Peak District! In September 2015, I joined them.
The friends I have made as a result of events like this are priceless.
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 three years, I have watched our group change a lot. We have grown considerably in number (thanks primarily to our social media presence). Members have come and gone, received transplants and started dialysis. Some have got married and had children. Sadly, some have passed away.
Regardless of what happens in our lives, our now not so little 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.
Once every few months, someone will get The Call. Watching their Facebook wall explode with messages from people who know how life-changing transplants are NEVER gets old. It makes me smile every single time.
A similar thing happens when one of us is struggling. Whenever a comment is posted in our group from somebody needing help, advice or just an audience to rant at, the replies appear almost immediately. People volunteering suggestions, practical help if they’re near enough, or just acknowledgement that nobody is ever alone.
This group of friends inspires me and pushes me to do things I never thought I would.
They also make me laugh. I have never met so many other people who truly appreciate the dark humour that’s only funny to those of us who have really thought about death. They’ll know what I mean.
“Walking with a friend in the dark is better than walking alone in the light.”
– Helen Keller