THE BLOG
28/02/2018 10:48 GMT | Updated 28/02/2018 10:48 GMT

'But They Look So Well' - What It's Like To Live With A Rare Disease

You know when you have a cold? Well, my children live like that everyday. Except they do not have a cold, they have a condition called Primary Ciliary Dyskinesia

Ippei Naoi via Getty Images

“But they look so well.”

I hear this often. Along with, “You wouldn’t know there was anything wrong with them,” and “They seem fine.”

And I smile and nod and say, “Yes, we really are very lucky.” And most of the time I mean it. My sons are lucky to have such a normal life, but a little part of me wants to scream and shout and stamp my feet at the lack of understanding. Yes, my children go to school most days. Yes, they are well most of the time. Yes, they do look perfectly healthy. But they are not. And a hell of a lot of hard work goes in to keeping them ‘well.’

You know when you have a cold? And you have mucus in your chest and throat and blocking up your nose and ears? You know how crap and exhausted that makes you feel? Well, my children live like that everyday. Except they do not have a cold, they have a condition called Primary Ciliary Dyskinesia. It is a rare, life changing and potentially life threatening condition that has already resulted in my middle child losing two thirds of his right lung. But if you read my blog then you’ll know this, I’ve written about it all before, more than once.

But what you don’t know is that I’m still struggling to come to terms with their diagnosis. And that it’s beginning to affect my relationships. I’m not entirely sure if this is down to me, or the people I know. You see, I know no one in the same situation as me and it is so hard to get people who are not going through it to understand. Most of the time it’s fine and when I’m ok it’s all ok. But then, someone may say something insignificant and I’ll comment and then get told that just because my children are sick it doesn’t mean other people can’t worry about their own children, which is a tad insulting because that is obvious to me. Our fears are all relative, I know that, but maybe, just maybe, I deserve a bit of extra special treatment, a bit of empathy, maybe, or understanding, some kindness.

I’m acutely aware that at the moment, more often than not, I’m being seen as a moody, grumpy person who wirres all the time, and it’s becoming somewhat true. For if you’re perceived as something it’s damn hard to fight against it, right? And I’m sure if my friends read this they’d say I was being most unfair, they’d shout that they do support me. But, in all honesty, I’m not sure many of them really do. And it’s not their fault. It’s because I don’t tell them how hard it really is. Or how isolated I feel. Or how anxious I always am. Or how it is a miracle that I get out of bed most days, have a shower, put make up on and do the school run. I feel like I’m constantly having to remind people how hard it all is and then I imagine them rolling their eyes and saying I’m blowing it out of all proportion, because, and I quote, “They look so well.”

Not every disability is visible. Not every child running into the playground is in perfect health. Not every mother wearing make up and smiling is happy.

And just because they look ok, it doesn’t mean they are.