28th Feb 2014 was the 7th Rare Disease Day. I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done. So this is my first contribution. Go and have a look at what they have to say (but first finish reading my post ;0).
What is a rare disease? I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities. Nobody knows much about them.
In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.
Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease! That’s nothing. You have no idea how lucky you are”.
I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick. My baby was sick all the time. I couldn’t relate. I had no empathy for them.
It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.
Every parent worries. It’s never nice when your kids are sick. I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.
So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.
In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease. You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.
Let them know that.
p.s. it’s not sympathy we are looking for, just some understanding.