I was wondering if anyone has any tips or ways to explaing MS to children. I only have the one and shes 5yrs old. I was dignosed during pregnancy and then had the tests like spinal after having my little one to confirm it was RRMS. Obviously becoming a mother was slightly scary but becoming a mum with MS was even more scary. Ive managed to hide most things but some things have become more visable or shes now noticing more like always feeling tired, having to go the hospital so a shot as she says, wanting pjs days, crying for no reason and pain especially tonight she witnessed me rolling around the sofa in absloute agony with cramp and burning sensation on my leg.
If anyone can help I would appreciate anything. I think its now time to kind of explain something to her as she went to bed crying because she thinks my pain will never go away and its broke me seeing her like that
The MS society have special publication free of charge for explaining ms to children. If you get in touch with them I am sure they will forward you a copy.
This might be a good starting point. I believe there are also days where children and families meet up but that will depend on where you live. Reading matter also available but probably more suitable for older children.
Hi Claire,
Explain things as the crop up. Seeing a family member in pain or discomfort is scary and without any type of explanation it’s even scarier. It’s not a big sit down conversation, it’s an every day chat.
MS symptoms, as I’m sure you know, can make you behave in a manner that is not always happy and joyful. People around you (children and adults) need to know that they are not the reason for you looking sad, angry…
An example of things I might have said to my daughter when she was 5.
How are you Mum?
" I’m good. The signals to my legs are having an off day and I’m finding things a bit difficult. Could you help me make breakfast? "
“I’m in a bit of pain today, lets watch a movie and take it easy”
“I don’t know what is happening with my body just now, I think I’ll have to talk to the doctor.”
My daughter is 20 now, she was 3 when I was diagnosed. She often knows what is happening with me and my symptoms before I do. She says that she is glad about the way I have spoken about things over the years. Whether it be about MS or the birds and the bees, it’s never just a sit down and tell all, it’s relevant information, that is appropriate at the time and it’s always good to ask, especially when they are young if they have any questions or worries. I do remember my daughter thinking that one of my symptoms was her fault, which of course was not the case but that was swimming around in her little mind for longer than it should have, and if I hadn’t had an regular open and honest chats with her, it scares me to think how long that thought would have remained in her head. Its always good to make MS funny too, having a laugh about the crazy way you are walking or that you have dropped something again is always good. My daughter still copies my walk and does the odd MS impression. Hope this is of some help.
think I came across it previously