How to talk to your child about multiple sclerosis

How to talk to your child about multiple sclerosis

Written by Barbara Stensland

There is something utterly heart-breaking about telling your child you have MS and striking the balance between reassurance and being factual can be filled with difficulty. 

Your parental instinct is to protect your child but in this situation you can’t, as keeping quiet could worsen any anxiety they may already be experiencing. Children are experts at picking up the subtlest changes, and, if approached well, telling them can actually make them feel empowered and armed with the right kind of information. 

My son was eleven and about to start high school when we had the conversation. He knew something was wrong but was not overly concerned at the time as most of my symptoms were invisible; and therefore, much easier to conceal from him. Plus, the excitement of the summer holidays and starting ‘Big School’ assumed a large significance. In any case, as with most people eventually diagnosed with this illness, it is not an overnight process; it can take months, sometimes years and I wanted to wait until it was confirmed. 
I agonised about how best to put it into words he would understand, as I knew this would be one childhood conversation he would probably always remember. I gathered together booklets about MS aimed at children and poured over them, looking for accessible ways to convey complex ideas. For example, explaining that our brains are powered by wires, just like plugs have, and sometimes they get a little frayed (exactly like his Playstation cable did once), and when this happens, the signals don’t get through as well as they should. 

Simple and effective.

The day arrived and I cooked him his favourite meal along with a generous dessert and opened up a conversation about MS. I was gentle, factual and tried to let him know that I would always be his ‘strong, capable mum,’ even though things seemed a little different. 

He took a few moments and then asked, ‘are you going to die from it?’ and ‘will I get it?’ I answered both honestly, reassuring him every step of the way, backed up with information from the booklets. My MS nurse had also offered to visit our house and chat with him, to allow him the chance to ask any questions. 
He seemed fine and life continued as normally as possible, until the day I found him crying in the bathroom. Through huge, gulping sobs and tears, he told me has was worried about me and he didn’t want me to be hurt or be in pain. My heart shattered into tiny pieces and we sat on the floor, hugging. I told him all these feelings he was having were completely okay and understandable and it was good to talk openly together. He mustn’t feel he couldn’t talk to me about anything for fear of upsetting me. 

I had been so determined not to be a burden to him, and to keep as much as possible hidden, that he was having problems understanding the nature of the illness. In his mind, I looked like the same old mum, so why was I tired all the time? Why did I trip over on a regular basis? It had frightened him, and he bottled it up. 
Using simple explanations again, I made him laugh when I said, ‘you know how it feels when your arm goes to sleep, or your hand? Well, it’s a bit like that for me and it can mean I drop things or walk funny.’ And, ‘you know when you stay up a lot longer than you should on a school night, chatting to your friends online? Imagine that tiredness you feel the next day and multiply it by ten, and that’s kind of like how MS fatigue feels, because of those pesky frayed wires we talked about before’. Sometimes bringing humour into a serious situation worked wonders for us, as did linking it to something in his life he could easily understand.  

During the worst days of my MS, I managed to run a lot of our lives from my sofa, where I was spending a lot of time. Thankfully, I had a wonderful circle of friends and family who took on roles I was no longer able to do. My son’s rugby club drew up a rota for collecting him for training and matches and dropping him back home again. A fellow mum at his school attended parents evening on my behalf, bringing me home detailed notes from each of the teachers. Other friends would invite him along on family outings to the beach, something I could never consider doing with my MS heat intolerance. In return, I allowed a generous amount of sleepovers – my son was over the moon and I knew he was happy and connecting with his friends, rather than worrying about me. 

MS is not a journey you can take on your own, although it may feel that way. In a strange way, our shared MS experience has made us a stronger little family and he is now happy and thriving at University, while I couldn’t be a prouder parent. 

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