Conversations with my daughter

“Mummy has a wobbly leg!” That was what my daughter would tell people when they asked if I was ok.

I first became unwell with MS in November 2022. My daughter was six years old and had just begun to get back to normal after suffering with anxiety during the pandemic.

When I suddenly became unable to walk without staggering and was admitted to hospital, my first thought was “What do I tell her that won’t be frightening or confusing?”

First conversations about MS

I remember crying in my hospital bed because I was so worried about how my illness would affect her. I’m a single parent, and it’s always been Bella and I as a team. What would happen if I couldn’t look after her anymore? I lay awake all night on the ward, frantically trying to formulate a plan. 

I was in hospital for three days and even though I couldn’t walk in a straight line, I was so happy to get home to my girl. I told her that I had a funny turn and was a bit wobbly, but that Granny was there to help and we would be fine.

At that point, she just listened to me, gave me a hug and got back to the important job of bandaging the patients in her animal hospital. She didn’t have any kind of emotional response, and I was happy for her to carry on living her little girl life without worrying about me. 

Finding support

But as time went by, I started to worry what would happen if I had another acute attack of symptoms and we were at home, just the two of us.

Would she know what to do if I needed help? Did she have trusted people to go to? This became my main worry, and I knew I had to get some help with how to approach this with her.

I did a search for help on talking to children about MS and followed a link to the MS Society. What a great website it is!

When I couldn’t find exactly what I was looking for, I emailed the MS Helpline asking for advice. The response was fast and informative.

I was sent a copy of a leaflet on how to talk to children about MS, a suggestion for some storybooks about the condition, and some really empathetic words of encouragement. I finally felt able to have conversations with Bella about MS.

Conversations with Bella

By this time, I'd had my diagnosis of relapsing remitting MS and was feeling more mentally ready to talk about it. Bella was seven and taking more of an interest in my health. We started out by having a casual chat about my “wobbly leg” and all the things that were tricky for me to do.

We discussed things we could do to make life easier. For example, Bella suggested using a tray to carry dishes from kitchen to living room. A few days later, we read the storybooks that were recommended and had a chat about what was similar to my situation and what was a bit different.

After a few weeks of having little chats about MS, it was time to prepare her for any emergency situations. Bella loves imaginary play, so we started playing “Mum’s not well and I have to get help!”

We would go through calling 999, making sure to only open the door to police or paramedics, and which of our neighbours she could go to for help. She loved this game and so did I - mainly because, being the patient, I spent the game lying on the floor waiting for help!

Our life now

It’s been three years now. My girl is nearly nine years old and going into Primary 5. Time certainly has flown!

We still have regular chats about my MS, but it doesn’t rule our lives. Bella knows my limitations and helps in any way she can. I really feel she’s become even more empathetic and kind since that awful day in November 2022.

I couldn’t have gotten through the last three years without her, and I couldn't have had such positive conversations with her without the help of the MS Society. Whatever you need advice or support with, the MS Society can help. Just reach out.

Stay strong, MS warriors.

Our MS Helpline gives emotional support and information to everyone affected by MS. We’re here Monday to Friday, 9am to 7pm except bank holidays. Give us a call on 0808 800 8000, or email [email protected].