Telling the children - Advice please


Im hoping that someone can offer words of wisdom on how to tell our children. Our daughters are aged 11 and 7 and I have an appointment in the UK with a Neurologist in a couple of weeks. I feel I need to explain why Mummy and Daddy are going away for the day and my left arm has decided it will shake when trying to do certain tasks and they have noticed.

My thoughts on telling them is to keep it fairly light. With eldest having access to the Internet I’m worried she will Google condition and scare herself so I was thinking of maybe avoiding naming condition. Then I thought I’m overprotecting and if she comes across something we could discuss it.

Anyone have any thoughts or perhaps been here themselves?


Hi Tracey

There are a few web links that may be of help. The MS Society, scroll down the page on the following link and it discusses telling your children.

The MS Trust


Have you been diagnosed with MS?


Yes, I was diagnosed in 2011.

The society also has two guides in their literature. Look in the Families section in:


Why do you want to tell them?

What you cannot predict is your children’s response if you tell them you have m.s. and it will be very difficult for you to judge just what they are thinking. You can’t return the genie back into the bottle!

If your m.s. isn’t impinging on what you do with them then I wouldn’t say anything.

I know this may be a minority view but I’d say nothing - they are ony 7 and 11.

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Yup, I agree with Krakowian. Mine are 12 and 10 (& 3), and have seen me take pills, but I just said daddy is poorly. They pretty much left it at that. They know I get moody, but they accept it. Leave it until it becomes an issue, but I wouldn’t rush into it. :wink: Take care


agree Carraboy.

The question most children have when told their parent has m.s. or any other illness is ‘Are you going to die?’

– a very difficult one to give a reassuring answer to a young child.


I agree. You said you feel you need to explain to them… Is that for you or for them? Would you really be doing anything to benefit their world by telling them?

Mine was 8 and we told him a little bit as I had some nagging symptoms. He seemed OK with it but some time later he became upset as he thought that as my Mum had died when I was young, that I would die too. It took a bit of explaining to get rid of that worry but I’d have done anything for him not to have had it in the first place.

If you have to tell them, keep it as light as possible.


Hello, My youngest was 10 when i became really poorly and had no choice but to use a wheelchair and had to give up driving , she was very sad because we had done loads together, we’d gone swimming every week and i’d regularly helped my son with his paper round, id known something was wrong for a while but rather dramatically i lost the use of my legs. For quite a while before needing a wheelchair they used to joke that i walked like the tin man… The biggest thing was coming to terms with it myself and changing my outlook and then reassuring them that we could still do loads of fun things even in a wheelchair, It was almost as if once i’d excepted it, they could… so my explanation was just…mums got wobbly legs,… i’m not saying its been easy just tried to answer any questions when they came up…she did ask me the usual was i going to die…and one day at school when they made a wishing tree her " leaf said i wish my mum could walk again" that was quite sad. Looking back it wasn’t easy and at first she was embarrassed wondering what her friends would think when they saw me in my chair, but now we’ve come such a long way… and she begs me to go places with her, on Monday we both caught the train with Frazer my assistance dog and had a fantastic day out.

Michelle x

Totally agree Val.

I don’t have kids, so have no experience of this whatsoever, but just to play devils advocate and throw a different idea into the mix, would it be better to tell children at a younger age, before they are able to google and read all the horror stories? That way they have time to get used to the idea, and have better knowledge before they scare themselves by what they find online?.. I don’t think it matters what age they are, there will still be the ‘are you going to die’ question, or at least the thought. When I was diagnosed, one of my first thoughts was ‘is it going to affect my life expectancy?’, so even as an adult it’s still initially a worry for those diagnosed and their families.

Just a thought from someone with no experience whatsoever of kids!

Hi Tracey

I decided that I wanted mine to know as at the time my hubby worked nights and as my balance was awful I realised they were noticing me staggering past their bedrooms to use the bathroom after hubby left for work. One time I remember I actually had to crawl back to bed. The eldest who was 16 at the time (so older than yours) said “Mum, were you drunk last night? I saw you staggering back to bed”. I hated the thought that he thought I was drunk.

We just sat them down and told them a little. Not too much though just enough for them to understand. We haven’t had any problems at all with them knowing and I answered all their questions as tactfully as I could.

It is a personal decision though. I can understand why people decide not to say anything but for me it was a good decision and they are both bow working hard in caring roles and have grown up to be kind, caring and very compassionate especially to those who have disabilities. I am very proud of them as I am sure you are of yours.

Keep smiling.

Shazzie xxx

Morning, I told mine when they were 3ish, not ‘I’ve got ms’, what 3 year old child understands that? So I don’t suppose I told them that, but I’ve always been honest and I think I had to be. I went from able bodied mum to a stick, scooter or wheelchair user one very quickly and couldn’t hide it. I tried to be honest but age appropriate, and now 7/8 years later they know I have MS, and that this is the cause of things, even though they don’t necessarily understand what MS is. They seem to be coping with this. My disability affects their lives very much also, but I believe they are normal, happy, active kids and this is our family, so they needed to understand and not be kept in the dark. When you take your kids to school on a scooter, you get odd looks even the odd question from interested kids etc, but I think honesty is the best policy for us, and them, their friends etc now just accept me. Good luck xx

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My children were always with me when my problems first started they saw my leg give way, causing me to fall and we were out having a family meal when I suddenly couldn’t swallow and went numb in left arm and leg. So they knew from the start that there was something wrong.

It took two years for me to get a dx of ms by which time my children were 10,12,and 14 I got a book called Talking With Your Kids About MS for them to read and I have always been open and honest with them.

If you tell your children yourself then they will be correctly informed about how you are affected (within reason there may be some things they won’t need to know!) and if they did Google for information they would feel confident to ask you any questions they have.

For me personally I think if I hadn’t told them they would have been more worried we are such a close family I don’t think I could have got away with not telling them!

Good luck with whatever you decide to do, ultimately only you know your children and what you think they will understand and cope with.

Freckles xxx

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The odd thing on this issue is that you never hear from parents who admit to getting it wrong because they told the children.

We must never assume to know what is going on in a childs mind.

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I’m sure you know your children well enough to make up your mind as to what is best for them Tracey.

Good luck with whatever you decide.

Shazzie xx

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Good grief! I get things wrong all the time BUT if I hadn’t told mine, then started using my scooter and falling over in front of them, which has happened many a time, then what would they think??? Surely that’s more worrying to a child, then accepting mum can’t walk anymore but still loves them, and is there to do what I can and hug them

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The odd thing on this issue is that you never hear from parents who admit to getting it wrong because they told the children.

We must never assume to know what is going on in a childs mind.

How would you know if you’ve got it wrong? My children are sensible and level headed (and yes I am biased) it was so obvious that there was something not quite right with me if I hadn’t told them that’s when the trouble would have started with them worrying and potentially googling symptoms and coming up with goodness knows what!

No you can’t always assume what is going on in a child’s mind but I have always encouraged my children to talk and as a family we are all very honest and open with each other and nobody knows a child as well as their parents so only their parents are in the position to know what to tell them!

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Thank you all so much for your thoughts.

I told them yesterday that Mummy has to see a Dr in the UK about my arm (it shakes sometimes) and they took that fine. I haven’t let on that anything more at his stage.


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