Hi,
Apologies if this has already been discussed or if I’ve posted this in the wrong place.
I’m new to the forum having recently been diagnosed with RR MS following 2 episodes of optic neuritis. I have 2 children (13 & 10) and my husband and I are deliberating what to tell them about my condition.
We feel we do need to tell them something but can’t decide how much to tell. Whilst my symptoms aren’t visible (at the moment) the stress and worry associated with the diagnosis is manifesting itself in other ways and I feel that my children deserve to know why I might be snappy or tired. Another major concern is that they may overhear something that they shouldn’t or maybe see a bookmarked page on my laptop or something that rings alarm bells.
My first instinct was not to mention MS itself as I was worried that they, particularly the 13 year old, might Google it and send them into a spin and I thought that maybe telling them about the optic neuritis would be enough to explain any changes they’ll inevitably notice at home but now I’m thinking maybe we can honest with them.
If anyone can offer any advice I’d be really grateful.
Thanks.
Hello. I can understand your worries.
The MSS do a leaflet on telling children you have MS.
Look at their publications list.
Pollx
Hi, I totally understand your dilemma only being a year diagnoised myself. I have 5 children aged 15, 14, 11, 6 and 5. They all know I have ms, the older 2 I am very honest with about the illness, the younger 3 I have explained Ms as sometimes having wobbly legs and feeling tired.
i felt it would be impossible to keep it from them, either a family member would slip up or they would overhear me talking when I thought they were out of earshot.
theyvall took it in their stride, I get the odd question which I answer in an age appropriate manner. My 11 year old asked would I die from the illness and once I reassured her that I wouldn’t she accepted that.
it is a very personal decision and you have to do what you feel is best for your family but trying to keep something that big a secret is stressful which is not helpful with Ms.
good luck,
ann x
Thanks Poll. I’ve read the leaflet and it was very helpful but I just wanted to hear some other experiences. It’s going to be a tough conversation and we’ll only get one chance to break the news to them. [Deep breath]. x
Thank you Ann.
I’m dreading it. I know I’ll cry (like I am now, just thinking about it) but I so want to deliver it in the same positive way that I’ve managed to do when explaining it to my colleagues.
My husband and I both think it’s best to be honest(-ish) with them. I know my oldest would be furious if he found out accidentally and as you say the stress of keeping this to ourselves would be too much.
Thanks again.
Rebecca x
Hi Rebecca, when I explained to my boys they were 12 & 15, a bit older than your two. I’ve since been told that they were pleased to listen to what I said because they were beginning to wonder. So I personally think it’s better to explain to the children, rather than them worrying what could be wrong with you…what they could be fretting about might be much, much worse.
By the way, I cried too…but once it was out in the open we all felt a great relief.
Good luck
Rosina x
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Thank you Rosina. We can only hope that we do it the right way - if there is such a thing. I don’t suppose you can ever really predict how they’ll react.
I’m looking forward to a few weeks down the line when it’s out in the open and they’ve had a chance to ask questions about things which might be bothering them.
In the meantime I’m sure I’ll go over what I want to say a million times and when the times comes I’ll either clam up or just blurt it out and then burst into tears. We’ll see!
x
Don’t worry even if you do cry, just tell it little by little over time & then you can answer the questions as & when, you’ll be fine
Rosina x
That’s a good idea Rosina. Not tell them everything at once. I’ll try and remember that. x