Last reply 1 week ago
Should I tell the children?

Hi all, I was diagnosed with RRMS in July but I’ve known about it for years…my children are 11 and 8 and now they ask me if I’m ok. They live and see me all the time so unlike everyone else they see my symptoms like aches and pains, tiredness, bladder problems etc etc. I tell them I’m fine but I know they are beginning to get worried for me. My neurologist told me I would have to tell them within 6 months, I’m not on meds as decided to go holistic ATM. I just don’t know whether to tell them. At what point did people tell their kids? And if I don’t say, what do I do to allay their fears. They know I went for ‘tests’ for noises in my ears so they know something’s wrong. I am not with that many visible symptoms and am on 12 monthly check ups. It is inactive ATM and my prognosis is good so I don’t want to scare them but they are noticing. Any advice would be greatly appreciated!! Thanks

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redd
1 week ago

Hi @kat1 your decision of course, but I think telling the children is good them & for you. We told our daughter when she was around 8.we didn’t go into any detail, just said it was the reason daddy was tired a lot. Over the last couple of years my walking has gotten really bad so we went into more detail about the brain signals getting lost on the way to my legs. She is 11 now & is pretty ‘cool’ with it. I sometimes use a wheelchair at home (for poor balance as much as difficulty walking & she knows this is because of the MS – we have explained this may get worse & it may not as nobody knows for sure. She occasionally asks questions & we answer her honestly. As an 11 year old girl I think she’s more worried about being seen in public with me more than anything else 😂


stumbler
1 week ago

@kat1 ,

Our children are quite sensitive to spotting situations, but don’t fully understand them. Sometimes, they just need reassurance that “Mummy” is OK and won’t be taken away from them anytime soon.

There’s some good booklets from the MS Trust here which may help :-

https://support.mstrust.org.uk/file/store-pdfs/Talking-with-your-kids-about-MS-LR.pdf
https://support.mstrust.org.uk/file/kids-guide-to-ms.pdf
https://support.mstrust.org.uk/file/young-persons-guide-to-MS.pdf

You can request paper copies free from here :-

https://www.mstrust.org.uk/order-a-publication

and follow the “For Families” link.


thecuriosity
1 week ago

So, I don’t know your children and how obvious your symptoms may be to them, but I do know that as a kid growing up I had to watch my mother who was unwell and I hated not understanding what was going on. I would want to know, so that I could understand better and help when it was needed. The more I was told as I got old, the more I felt respected and ‘grown up’. It was upsetting knowing it wouldn’t get better for her but at least we could understand her actions a bit better.

Last year I came across this site from speaking to some people at an MS conference and it was really helpful in seeing how you might be able to speak to your kids. There were also practical examples which could show them how it would affect you. http://digestingscience.co.uk

Whatever you decide, know that your children still love you and care about you whatever happens.


vixen
1 week ago

Hi there, my sister was diagnosed last year and her kiddies are the same age. They were aware that she was tired and had ‘aches and pains’. She waited until she was fully sure how she felt about the diagnosis which, in her case was nearly a year. That way, she was able to take an almost ‘oh, by the way, we know what’s wrong with mummy now….’ approach and play it down a bit. What you don’t want, is for your children to start random googling, as it will come up with the worst stories that aren’t realistic. You could select some YouTube clips which demonstrate how specific exercises help. That way they could join it too! All the best x

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