Talking about MND can be quite difficult, but it is necessary for so many reasons. Firstly, it is good for your own sake to talk about the problems and difficulties you and your family face – you should never keep things bottled up.
Secondly, it helps raise awareness. It brings more people into contact with MND – and the more people understand, the better.
Thirdly, especially when it comes to your manager and employers, it helps others support you and understand you a bit better. By discussing motor neurone disease and the impact it has, the other people around you can empathise better, and cut you a bit of slack when times are hard.
I started a new job last week, and this was a conversation I knew I had to have. By telling my new employers right from the start, they would know that I am not disclosing anything from them, and when I’m distracted because Mum has a hospital appointment, or there’s something wrong with her, then I’m not just slacking off work. Also, when the day comes that I may need to invoke the clause in my contract for compassionate leave, at least my new employers have been aware that this is something that is on the horizon – making it easier for everyone to deal with.
Still, it has only been two months, and although talking about MND is much easier than it was, I still struggle telling someone for the first time. What do I say? I still don’t know how to phrase it, or how to stop tearing up when I try to explain to someone who doesn’t already know.
It’s especially hard when you’re trying to make a first impression. MND does not define me or my family – although it’s a huge part of our lives, it’s not all there is. I enjoy history, politics, pub quizzes and books. I’m quite a silly person at times, and I make sarcastic jokes quite a lot. I’m chatty and like a cup of tea, a biscuit and a natter during the working day. These are all things my new colleagues need to learn about me – MND is just one part.
I waited until the end of the day, which I’m still not sure was a good idea. I figured it was better to leave it until 5:30 because it wouldn’t distract from anybody’s work. In the end, I feel like I sort of dumped quite a big thing onto my new manager and then fled before she could digest it.
How do you bring something like this up for the first time? There’s no nice or natural way of saying ‘oh, by the way, my mum is terminally ill’. Especially with a disease so cruel
Luckily (in a way), Mum has an operation coming up – she’s having a PEG fitted. This meant I had to change some booked holiday, so there was a way of explaining that there is something huge happening in my private life, which they need to be aware of.
I sat with my manager and said that my mum has motor neurone disease. When explaining it to people for the first time, I never say progressive bulbar palsy, because I know that is even more alien than MND. She did seem taken aback, and I was surprised by how difficult I’d found it. She said ‘I’m sorry to hear that’, and that was all.
In a way, I felt foolish, as though I’d made a big deal out of something that doesn’t affect me every day in the office. Perhaps that’s why I didn’t hang around for much longer – it had been a tiring first day, and I just wanted to get home.
Did I approach this in the right way? I have no idea.
What I did do, is just bite the bullet. Now everyone knows that when I’m texting my sister, I’m not just having a gossip. I’m caring for her and my mum, from a few hundred miles away. And when the day comes that I have to take compassionate leave, I won’t have to worry about explaining how I’ve kept this secret for however many months or (hopefully) years. I won’t have questions to answer. I can just focus on my family.