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Hi there,

Just wondering how people out there told thier kids about their MS. I currently live with my boyfriend who has 2 girls (age 11 & 15) - they live with us part time. My MS has been fairly inactive since we have been together. But it has now turned aggressive and I am needing to start full time injections to try and slow it down. (I am happy to have found this website and see of other ways to help curb the progress!) We haven't told the girls yet - and I am wondering what to say to them? I'd like to be open and honest, but don't want to scare them either. Would love to hear how others out there broke the news...
Thanks in advance :)
8-) My kids are 9 and 12 and the 9 year old is the biggest worry wart in history. They are both very sensitive little souls--I worried about telling them. We have been honest, but very non-chalant about the whole thing so as not to create a cloud of worry.

At first we weren't going to tell them--which was 100% against my better judgement. But my husband was afraid it would scare the kids and put my youngest into a world of fear. Then, I decided to start taking Copaxone--a daily injection, and you can't "hide" that. I wasn't going to lie. So, I sat my kids down and told them something like the following:

You know how Mommy has had issues with being tired and with migraines lately? And do you remember how my arm started going to sleep and I had to go to the doctor? Well, it turns out that I have a a very active immune system and it gets a little over active sometimes (too which my youngest said something about it being like her and we giggled and so on). Since my immune system has this tendency to do this I have to eat special foods to keep it from acting up (my son is allergic to peanuts so I compared it to that) and I will have to take special medicine that will help keep it under control.

When they asked what it was called I told them it was called MS or Multiple Sclerosis and we left it at that.

I assume that my older son will Google this at some point and he will ask harder questions. I plan to answer them honestly and clearly.

I've worked with teenagers a very long time (I taught grades 7-12 for 12 years and now teach the teachers of those age groups). They can handle a lot, what they can NOT abide is lying or secrecy as they find this to be the ultimate betrayal especially from adults who have preached that this is not allowed. So--a calm and clear conversation that allows him to ask me whatever he wants and that gives him whatever answers he needs will be my response.

I plan to assure him that MS is NOT a death sentence and that I am doing EVERYTHING in my power to remain healthy. I accept that there is a chance that I may lose mobility at some stage but I do not accept that I have to give into that eventuality without a fight and that even if that unfortunate outcome is my future lot, I intend to continue living my life with pride, love and joy--and if I end up in a wheel chair it will be the coolest damn wheel chair he's ever seen 8-) because that's how his mom "rolls." LOL

And--above all, I love Him and his sister beyond all else and that will never change. And that is why this diagnosis hasn't crushed me--because I have the greatest family and the greatest gifts in the world and if this is all that is asked in return--so be it.

Good luck to you..
I love the way you compared it to things the kids would understand, like your son's peanut allergy and laughing at your immune system being overactive sometimes.
My kids were aged 5, 7 and 9 when I was diagnosed. At first I wasn't sure what to tell them. But then I discovered OMS and realised that I could do something to help myself. And at that point I HAD to tell them, to explain why I was completely changing my diet and lifestyle. You're right that it's hard to hide a daily injection, but it's completely impossible to hide the fact that you no longer eat meat or dairy or eat anything fried in oil etc etc. It felt better being able to let them know that I was in control (though whether that felt better for me, or better for them I can't say). And I wanted to be totally honest with them too, I didn't want to pretend I was doing it for other reasons.

I drew a picture of a body, and showed the lesions that occur and drew them exactly where mine were on the diagram. I explained in simple terms about myelin being removed and the problems that causes. Then I explained what I am doing to help fix the problem by putting my immune system back in balance. I let them ask any questions they wanted to ask, but they really didn't have too many! None of them had ever heard of MS before, or had any idea what it might mean, which was helpful. I wondered that other people might cloud their perception of the disease, but actually I don't think they ever really mentioned it to anyone else.
One of my kids is very anxious too, but she hasn't ever thought to worry about MS, which is interesting, though she regularly worries about the house catching fire, being murdered, getting struck by lightening etc etc
Of course now three years later my kids are all very involved in my journey and have adopted a lot of the same lifestyle and healthy habits - mostly through choice.

Hope that helps,

Karen
OMG April 2010 OMS June 2010
Karen,

Your worry wart and mine sound like they'd get along just fine!! Mine is TERRIFIED of the house catching fire--she just knows that the next thunderstorm will be the death of her, every monster that ever existed is quite clearly in our house, or coming out of our television to live in our house (must be a comfy place we have for zombies :roll: ) and yet when it comes to my MS--she took me at face value--jumped off the couch and hasn't worried (out loud anyway) about it since I told them about it.

Kids are so funny.

Take the gifts for what they are--hope you are all doing well!

D
Thank you so much for your responses below. Truly helps!

We have not had the conversation yet with the girls. We are thinking of sitting them down maybe this week and you have given us some great ways to approach this with them.

Interesting that you both have worry wort kids - that's our 11 year old! So interesting to read how similar their worries are. I think that was one of my biggest concerns - how will she handle the news? We are having such issues with her that I didn't want to pile on one more thing for her to worry about. So I am relieved to hear that both of your kids have dealt with the news ok!

I so appreciate you taking the time to share your stories. I'm feeling a little overwhelmed with everything right now - so to hear others experiences makes these things I need to do somewhat less daunting.

~Christie~
We have a bunch of kids from 13 to 5 yo. We have told them all but in a 'non-threatening' way. That is, 'Dad has a disease and it has some impact now and will more so in the future' - pretty direct. But we surrounded this by me continuing 'normal' family activities. So the kids (especially the older ones) 'get it'; but not really. And then hopefully life will roll on 'as per normal'. Occasionally I admit to them in not being able to do something (e.g., lost my balance so couldn't play 'chassies' with the younger ones). The kids are pretty good at accepting these comments and have some very practical and pragmatic solutions (e.g., the 'chassy' game continued and when Dad was in everyone had to walk - suggested by the 5 yo). I have had another chronic disease for >10y that they are aware of as well - that probably makes the initial bit easier. Hope this helps.
In UK we can get books about MS for children/teens from MS charities - maybe charities or something similar in where you are, worth asking. My boys are 6&8 and I have been honest to them from the beginning as they needed a name for it so they can have better idea that it is not me or them or anyone that makes me tired, wobbly etc. it really helped them having names for my legs (a brill idea from a close friend) - Ruby (right leg-bad one) and Rosie (left lag) so they can ask how is Ruby today? Or I can say oh Ruby's playing up today - it sure do help me too as it is miles much better than saying 'my legs isn't great today' really helps my self esteem and we sometime laugh about Ruby and Rosie.they even called my MS Mary! Though not used it yet. I leave the books on their bookshelves so they can have a look whenever they want to.

I haven't told them full details about MS, just basic things and leave it to them to ask questions when they are ready. Someone did say that they'll be more rounded person than most children, worth remembering this -so best to be open than keeping things hidden.

I was told that children (up to 10yrs) often blame themselves for whatever happening around them, no matter how well we 'hide' from them or how often we tell them it's not their fault but it helps - it was the main reason why I decided to be open rather than them trying to figure out what is happening to their mum and thinking it's them who caused the problem.

Just realised that the boys or I have not spoke about Ruby or Rosie for a while - think they now understands better with what's happening - thought my legs are better than it was a year ago.....
X
Keeping it between my wife and myself for as long as there are no visible signs..
Diet is a matter of healthy living , same answer when I gave up smoking.
Tysabri once a month not noticeable. Only when they broke a vein while performing a jcv test.
Cant really find a reason why to upset these souls and cause worries.
Enough worries already for me and my wife.
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