“Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain” – Vivian Greene.
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’” – Mary Anne Radmacher.
These quotes seem to sum up my life in a big way. It’s all about making the most of your situation, seeing the smallest bit of positivity in a world of hopelessness.
That’s what sometimes living with a chronic illness like Gitelman syndrome can be. I often find myself having good days, bad days, and very bad days, but even in those times I think, “well OK, so I have achieved something, even if it’s very small.”
For me the positivity has been gained by a number of small processes:
- Letting go of the personal sense of failure. This might seem odd to those who have never experienced it but I would actually consciously feel an overwhelming sense of failure if my blood potassium results had been low for no apparent reason or if I had overdone it again by doing too much and using up too much energy on my “good day” – I would beat myself up emotionally for it!
- Stop identifying myself as ‘Natalie with Gitelman syndrome’. I am, first and foremost, Natalie. Just me, who, yes, has a life-long condition. But I am not, and will not, be defined by it. I know this syndrome takes over most of my life, yes. But I am still me: the funny, slightly awkward, geeky girl that I always have been, just with enough pills inside me so that I rattle!
- Envy and jealously… oh those horrible, horrible emotions. The dangerous poison that we all have at times. This is the most destructive thing that we can do when we have a chronic illness. I learnt to not be thinking “I wish I could do this and that, and go places like her/him” or ‘like normal people do'” or to want to stick a great big “broken” sticker on my chest and go and cry in the corner. That’s not exactly helpful! I must just be grateful for what I have and understand and realise that I can have much fun and enjoyment in others.
Don’t headbutt your situation. Outsmart it and try to be positive.
I live with Gitelman syndrome, a rare genetic kidney disorder. Although it’s genetic and I have had it since birth, it wasn’t diagnosed until 15 years ago and, as many people, medical professionals included, still know little or nothing about it, I have made it my personal mission to raise awareness.
In order to achieve this I have created an internet resource website and forum, which gives medically-backed information in an easy to understand language, to support those affected by the condition.
About Gitelman syndrome
Gitelman syndrome is a life-threatening genetic tubular kidney disorder. A key characteristic of the syndrome is that it is a salt wasting condition which presents with severely low potassium and magnesium levels. This is due to a mutation in the gene SLC12A3 in the distal convoluted tubule. It is estimated that Gitelman syndrome is extremely rare and occurs in 1 in 40,000 people and can affect both males and females equally.