Hi. I am new to this forum. Had relapsing remitting MS diagnosed 2 and a half years ago. Have adopted an ‘ostrich’ style response to this until now. My symptoms are worsening, becoming less invisible. My main concern is when and how it is best to explain to my 9 and 5 year old. Are they too young? I don’t want to worry them but feel, for example, that my fatigue levels are starting to affect them. Any thoughts / ideas / advice gladly received. Ann
Hi Ann, and welcome
I started off by telling my two that mummy had a bug that made her very tired, but they were only 3 & 6 so I’m not sure your two would buy that so easily, especially as children are so savvy these days.
The MS Trust do a really good booklet aimed at children, as do the MS Society (have a look in “publications” on here). The booklets are free and you can either download them or order hard copies. Why not have a look at them on-line and see what you think?
Generally, I think it’s best to tell children asap and to keep it low key and matter of fact. No need to give them the whole warts and all version, but children do pick up on things and if your symptoms are noticeable, they may be worrying that there is something more serious wrong with you.
Children are amazingly resilient and cope remarkably well with things that a lot of adults struggle with. Yours will probably surprise you by taking it all in their stride
Karen is right , I like yourself hoped that I could keep it from them as long as possible, but after a year had to let them know that mum got tired quicker , ironically I thought my oldest would be the one that took it the hardest but it was the youngest, but again someone told him it wasn’t the end of the world , that i would still be there , he was fine after this ,and he is now the one in my whole family that gets it,they where 15 and 12 at the time now 23 and 21 , i guess i wanted was to protested them for as long as possible, as I didnt know myself what the future held, Karen is right and yes kids are good at coping and like karen is saying you dont need to tell them everything, I still dont discuss a lot of things with hubby as he would only worry , and they can be great little helpers, i think it has helped my two be more thoughtful to others and i have received comments from others on how they treat people.
Your children are still young and it is amazing how they adapt.
I told them straight away using the literature as Karen says. They were 11,13 and 15 though so could see dad was injured before that. My youngest used it as a badge of honour at school! when she had the full facts.
Hi, I told my daughter when I was initially being investigated. She was 12. She took it better than the rest of the family and has been the most supportive over the last couple of years. Kids are really resilient and they bring a whole new way of coping with their humour. According to her ms stands for mildly silly. There a lots of things that I can laugh about with her, the other day when I was having to measure urine output, my friend invited me to her house and I said ok, I’ll just get my jug and darcy burst out laughing saying isn’t it normally bring a bottle(of wine)
Hi Ann, my girls were 8 and 10. The MS nurse arranged someone to come to my house. The lady in question was fantastic, she had books, games etc. I left the room, they all spoke freely, and there was no fear for them, as they were able to understand in a child friendly way. Hope this helps xxxxx
They are now 24 and 26. They say it was invaluable, as their friends were telling them horror stories, but they knew the truth xxxx
Difficult decision to make. I kept it quiet from my 5 and 6 year old daughters until my symptoms started to show - walking affected.
I told them when they were 15 and 16 and told them the basics and it wasn’t terminal, they took it very well. They are now 18 and 19 and so helpful and understanding. Help with the shopping, put it all away. Youngest is doing A level Biology and today they were doing about nerves and nerve impulses, she says she knows it all because I have some of my meyelin sheaths missing so signals don’t get through.
MS nurse may come and speak to them or get the book 'my dad/mum has MS it’s aimed at the younger child.
Thank you all for your helpful comments. I will check out those publications - the books sound helpful. I love the ‘mildly silly’ idea too! Low key definitely appeals as the way forward. I’m pleased I’ve pulled my head far enough out of the sand to check out this forum. So much helpful and friendly advice on here. Thanks again. Ann
I have a three year old and this is something ive wondered. He knows mummy has a daft left leg and does exercises everyday which he joins in with but he obviously doesn’t know the cause and at his age wouldn’t understand. Its only recently its been more obvious however im determined that he won’t be affected by it too much. But its an interesting question cos at what stage do I tell him why my leg is daft? X
As Karen said Lisalou check out the literature that the MS trust provides. There is one for very young children with pictures that explains MS on their level. If your child knows about your MS at a young age they will be accepting of it and take it in their stride! Hth, Teresa xx
Thanks Teresa , I will do that. I was diagnosed pre Charlie so we always kind of knew he’d grow up with this as just part of life. He is aware I nap in an afternoon when we’ve been busy etc and even urges me to go for one so he can have daddy to himself for half an hour cheeky thing x
My boys are 5 and 3 years and so far I’ve just told them that I’m “unwell” when I’m relapsing, as my symptoms aren’t really noticeable at other times. I’ve read them the “My mum makes the best cakes” MS Society book as I think it will help when I do go into more detail. My eldest knows I get tired and sometimes have bad legs, but that’s as far a it goes. My youngest is really too young to get it at all! My plan is to keep them aware of how I’m doing but not go into details about MS until things either become more noticeable or they start asking questions. I want to keep their childhoods as worry free as possible and my eldest in particular is very sensitive. If I had noticeable daily symptoms I would be doing it very much differently though. X
My little girl was just about to turn 10 when I was diagnosed. She was aware that something was going on before that though because I had ON and was off work for 6 weeks which was the first time I was off that long since she was born. She also knew of my steroid infusions as I had to take her once when her sitter was busy and also of the various hospital appointments and scans as I had to schedule her childminding around it and was late picking her up or early, depending on the appointment time.
Our routine was all over the place so she was very unsettled. She had in her own mind that it was something big and scary and dangerous, so even before I was diagnosed I had spoken to her and explained about MS.
She took it really well. She had been worrying I was going to die so for her, the idea of me “just” ending up disabled was a big relief.
3 months now post diagnosis and life has gotten back to normal. She’s aware I have blips and bad days but all in all, the MS isn’t a huge part of our lives and not something she worries about at all.
I was diagnosed when my oldest was only a baby and have always been open about it with them so they’ve never not known. For them having a mum with MS was normality. Weirdly enough, there were five other families with a parent with MS at their primary school (only 200 families in total, so an amazingly high number) which made it much more normal for them.
Obviously you can’t magic up this situation for your children, but being very calm and just explaining to them that some people get MS and it’s just part of life and answering any questions that they have as straightforwardly as possible will probably be the best thing.
I took the decision to tell my children as soon as I got my diagnosis. I was very matter of fact and said that I had the same disease as gran (i.e. my mum, we both have ms). I was very honest and said it didn’t necessarily mean I would end up like gran (secondary progressive bad with walking). I said the outlook could be good or bad and no one can tell you how it will be and just to hope that it won’t be too bad. My eldest daughter straight away thought this to be unfair and asked why I had to have this disease, to which I replied why not? Lots of people have problems and at the moment I’m not too bad. It took her a few days to process the whole thing and I would be lying if I said she didn’t get upset. I told her we could talk about it whenever she wanted to, which we have done whenever she’s had any questions. with my younger daughter, who was six at the time it went in one ear and out the other because she couldn’t see my symptoms she found it sort of amusing and didn’t really ask any questions. I think children just absorb the information according to their age, which was very true of my two. I think this was the best thing for all of us because I’m not very good at hiding things and I think they would have twigged sooner or later that something was up. This gives them a chance to grow up with the word MS buzzing around in the background instead of dropping a bombshell say in their teenage years, when emotions will be running high and they may react badly. They even know I have to inject my medicine once a week. I do this privately of course but they find the idea interesting more than anything else. I’m just a very open person and I have found this to be the best way. My children just get on with being children and me telling them doesn’t seem to have had a huge impact on them and if I do have a relapse again in the future they’ll know it’s just mum’s MS playing up again. Don’t forget, we view this disease through adult eyes, children don’t have the same understanding (thank goodness). Understanding comes with age, so the longer you leave it before you tell them the scarier they may find it when you actually do. Hope this helps, good luck with your decision x.
I really appreciate all the comments on here. We all have 2 weeks off school now (I teach), and after talking with my husband we’ve decided to read them the book a helpful forum member has sent while we’ve got time to talk properly and then take it from there. I sometimes think they will worry and then find they take things in their stride so fingers crossed… Thanks again. Ann
I wish I had been more open with my son at my first symptoms but I was trying to protect him, a typical mother’s instinct. He was 15 and in his first year of his GCSE courses. I was waiting for the MRI scan of my brain but didn’t like to worry him so didn’t tell him. I was getting worse each day (slurred speech and unable to write properly) and the hospital sent through a neuro appointment for 6 weeks later so my GP said all I could was present myself at A & E. The hospital kept me in for a week right before Christmas and the hospital was closed due to the winter vomiting bug. I managed a quick hug with my son and they sent him away again. I was discharged on Christmas Eve with a diagnosis of CIS but I still didn’t tell him what was suspected as I thought it would be ages before/if anything else happened.
Unfortunately within 3 months I was numb from the waist down and my legs were seizing up and at that point I had to sit him down and explain what was suspected as my GP requested an urgent neuro appointment and I packed a hospital bag as I knew it was likely I was going to be admitted again. By the end of that week I was in hospital for another 5 days while my son was still reeling from the shock of what I had told him and I wasn’t at home to deal with it.
As he was 15 he was old enough to browse the internet and scare himself silly. He became convinced I would be in a wheelchair imminently as he had seen how bad my walking had become within that week. It took several weeks as I gradually improved before he was able to deal with it. It didn’t help that I was struggling with such a sudden diagnosis as well so we both went through the shock of diagnosis and the emotional turmoil together. He is okay with it now but I wish I had been honest at the very start as he has now proven that he can handle it but for us the timing was all wrong.