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
Last year I came across a set of fact cards produced by PositiveLivingwithMS.com. I thought they were just the job for explaining MS to young people. Or anyone else for that matter.
Hi Dani. My son was 8 when I was diagnosed and we told him straight away but in words that made it less scary for a child. He knew i was having some strange symptoms like ‘fizzy feet’ but there was nothing visible as such.
Having told him so soon, it made things a lot easier when it did start to show. So for example when I started using a stick, it wasn’t a big shock. I also made sure the Mums of some of his close school friends knew, just in case I needed an emergency school pick up or something. I never did, but it put everyone’s minds at rest.
Once he got to his next school, the Mum of one of his friends there also had MS which made things a bit easier for them both.
Whatever you decide, children are surprisingly accepting! Hope it goes well.
they love you and are worried.
i think you should tell them, but it is HOW you tell them.
perhaps say that you are telling them because they are grown up enough.
tell them that you are alright with it and need them to be alright with it too.
sending waves of love to you and your family xx
This may help https://www.mstrust.org.uk/search/telling%20children
Hello Dani, It’s not an easy thing to do but, these may offer something.
Good luck and take care.
I’ve just watched the link you posted very child friendly and hopefully that will be useful to Dani
Twinkle Toes x
i watched it too.
the legs like tree trunks i most certainly relate to and the hands like spaghetti!
Your kids are 11 and 8. They are telling YOU that they know you are not “okay”. i used to try powering thru fatigue and my daughter would say: Mom. Just lie down, I’ll cook the tea.
Kids are incredibly accepting even if you are “different”.
Hi Dani, I lived in a house where nobody told me anything. I think, as a child, you just know things and can feel them. You also know when there are hushed tones and untruths. It made me feel like whatever it was was my fault and then that extended to the whole family who had been told to ‘hush’. I had a long time of living like this. Every time we met family, they would all go quiet because they didn’t want to let the cat out of the bag. The thing was, I had worked out what it was all about when I was five but they kept the little white lies and non-truths going till I was nearly 17.
I told my children who were grown up, the day I found out. They had come with me for some of the tests. I was very outright. In fact, for me I was relieved as they were also testing for an unoperable spinal tumour that would be aggresive. So I cried a bit but just sat there and said ‘Thank God, its only M.S.’
I agree with the other posts, dealing with the unknown is a scary business, dealing with something that is explained properly and at the right angle, can be helpful. How can they start coping and talking to their friends about it, or seeking support as a child, if they don’t know what they are dealing with.
Our boys were 8 and 6 when we told them. Our daughter was a newborn. I had had another relapse which made my walking poor for a while. The boys were wondering what was wrong with Dad and why I hadn’t been playing football now. They took it all in their stride and each asked a question: Are you going to die? Can we catch it from you? After we’d answered those, the next question was " can we go back outside and play football now?"
Nothing to add about telling your children, What worries me is when you say - I’m not on meds as decided to go holistic ATM.
All the research and the science say that the meds DMTs work. In some countries these are prescribed as soon as an MS diagnosis is made. So seriously I suggest rethink and if offered them take them. Delay progression of MS and reduce relapses