Last reply 1 year 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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1 year 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 😂

1 year 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 :-

You can request paper copies free from here :-

and follow the “For Families” link.

1 year 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.

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

1 year 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

1 year ago

Thanks all for your replies, I have decided the best way forward is to tell the children…when the time is right I’ll drop it in to the conversation! I’ve got some books now from the links and will use the ones appropriate for my kids…I’ll update when the deed is done! Thanks again x

1 year ago

We told our son, he’s a smart cookie & knew something was up when I had all those tests (especially the spinal tap). He was 12. He took it fine. Had a few questions. Shared Solutions (the drug rep for Copaxone in the states) gave me a booklet for children whose parents have MS. I left it in his bathroom, because I knew he’d never read it if it was in his room, too many other distractions! He did read it, and told me afterwards. He’s been great. He volunteers for the MS Walk in our town every year, and when the National MS Society brings back the MS Ambassador program, he wants to do that with me. Kids are pretty resilient, I think!

1 year ago

My son was 13 when I told him, he was okay about it and has been a bit more of a help around the house (with a little push). In fact, my MS nurse gave me a good leaflet/book to let kids read on MS.

My daughter is 4 so has no idea what MS is even if I told her so haven’t really said anything to her yet.

I’m the same as you, no real visible symptoms at the moment. I started DMD on Monday, so far I’m okay – just need to hope it stays that way!!

Kids are very resilient – and if they understand then it may help you if you are having an ‘off’ day.

All the best x

1 year ago

Hi all, well it’s been almost two weeks now since told the kids. The telling went well and I was nicely prepared for the questions from all the research on how to tell children. I was asked since when did I know and why I hadn’t told them? I said that I had to get it right in my head before I told them. Had I waited much longer my answer would not have been accepted and it would have brought on negative feelings that would have been hard to deal with so definitely the right decision. Kids have been fine with it although my daughter thinks I’m going to break! Hopefully time spent with life continuing as normal for the time being will calm her mind. They have been great with me but unfortunately it hasn’t stopped them arguing with eachother!

Thanks for your input all, greatly appreciated x

1 year ago

Hi @kat1. So glad you told them. Kids worry and think the worst, even very young ones as they listen to family talking (and googling). Kids love getting involved with adult stuff as they feel included, not left out.

Hi @redd. I have balance and walking problems. Instead of using a wheelchair indoors, I push a trolley around which takes up less space and allows me more independence.

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