Talking to a child about MS - MS Awareness Week

MS Awareness Week (22nd-28th April 2019) is upon us again, and I the other day I ended up having a conversation with my daughter, Lib, about MS.

For any of you in a similar situation to me, how did you go about talking to your children about MS? Have you done it yet, or have you been avoiding it?

The whole thing used to give me the heebyjeebies to be honest, but as Lib initiated it, it actually all seemed very natural. Lib's at an age now (7) where she comprehends the consequences of things, and therefore has a much better understanding.

So what better thing to post during MS Awareness Week!

It all started when Lib picked the 'Our Mum Bakes the Best Cakes' book out of her bookshelf. This is a great story book the MS Society have created which has pointers and conversations that can be had about MS with a child when you are reading it. There's a free link to the book here, but it can usually be picked up from your MS Unit.

Of course the first question was:

Are you going to die because of your MS? 

I said no. For starters we don't know how anyone is going to die (though I quickly glossed over this point, because I definitely don't want her to start worrying about death, of all things). NB: Though having MS can reduce your life expectancy by on average 6-7 years (according to the MS Trust) compared to the normal population, this figure is reducing due to the introduction of better and better disease modifying drugs. MS is not a terminal illness, and there's nothing to show that my MS will be a factor when I eventually go. 

Where does MS come from?

Truth be told, nobody knows. They are doing lots of research to find this out though, and one day there might even be a cure. She obviously seemed happy and this thought.

Why do you have to use your scooter sometimes. Are you going to end up in a wheelchair?

Well, you know how my legs go wobbly? Well, that is caused by damage inside my body. When I get tired it makes my wobbliness get worse and I can't walk very far. That's why I use my scooter when we're out and about. I've had MS or 18 years now, and I'm not in a wheelchair, so fingers crossed it never gets to that.  Just because you may sometimes need to use things like a scooter doesn't mean you're going to end up using them permanently.

What makes MS?

Well, I get ill because your nerves have a special coating around them. My body is attacking this special coating which makes my nerves exposed (Mummy, what does exposed mean? For the meaning of exposed please refer to your nearest dictionary - I obviously didn't say that). Inside my body has damaged my brain and made things called lesions, which are like little scars. They stop my brain from sending the right messages, so sometimes my legs don't work very well, I have a lisp, my eyes get blurry, or I find it really hard to concentrate.

Why do your legs go wobbly?

The scars in my brain affects my legs, but really the thing that makes me most wobbly is something called fatigue.

What's fatigue?

Fatigue is like being really really tired and you can't move your body properly.

Is that why you can't run in the Mum's race on Sports Day?

Yes. It would also make my legs go stiff and tingly and I need to use all my energy on looking after you. :)

Finally the conversation has been had for now, and I'm happy that she feels confident enough to talk to me about it. All hail MS Awareness!

Mother and daughter, enjoying life regardless!