03-23-2011, 07:26 PM #1Registered Member
- Join Date
- Jan 2011
how do i tell my children about ms?
Can someone please share their experiences of telling their children about their MS diagnosis? How did you tell them? What was their reaction? how are they handling things now?
I want to hear the good, the bad, and the ugly so I am prepared for anything.
Thank you in advance for your support
03-23-2011, 07:55 PM #2Registered Member
- Join Date
- Mar 2011
- United States
Sorry this isn't quite the advice you are looking for but my neices are 4 and are very interested in my injections. They like to watch and ask all kinds of questions. I tell them that I am sick and my doctor tells me that I have to do this to keep me well. I think the more you involve them the better. My husband and I are in the process of foster/adopting so I will have to cross this bridge someday too.
03-23-2011, 08:10 PM #3
I have two kids (10 & 3). I was very open and honest about the entire testing/diagnosis with them. They are a lot more understanding than what we (parents) give them credit.
My son, the oldest, watched the video that came with the information packet on the meds with me, and we talk every day about how I am feeling.
I have let them be involved from the start with my shots as well. At first they just watched, then my husband and I talked and decided we would let them assist him with the shots (auto injector). So now "shot time" is "family time".
My little one goes to every appointment with me, my son will get to meet the neuro next month. I am going to take him out of school early so he can go with me (it's an early out day anyway). The kids are curious about what is going on, so I answer them honestly when they ask questions.
The MS Society has a book for children 3-7 to help explain on their level and it's free. We got a copy and I had my son read it to my daughter.
Good luck with everything! The kids are more understanding and will be less afraid of MS if you are open and honest about it with them.Selina
Know thyself means this, that you get acquainted with what you know, and what you can do.~Menander
03-23-2011, 08:35 PM #4Registered Member
- Join Date
- Mar 2008
I actually didn't tell my kids at first because it wasn't that bad and we did the injections at night after they were in bed. Since I have worsened in the past three years and it severely affects my walking I have had to tell them. I firmly believe tell kids only what they need to know. There's no reason to get into every detail because they don't understand and it's frightening. I have a 10 year old and 6 year old boy. I just tell them I have MS and it makes it hard to walk, I have medicine that I take and Dad gives me a shot (now I take a pill). I say they can't catch it from me and also that I'm sorry I can't run with them and do things other moms do but I will try to be the best mom I can be! Both boys love to help me with things and even hold my hand to help me up on a curb sometimes! It breaks my heart but I also believe they have more empathy for others because of it. However you tell them just say it matter of factly and no scary details. Hope it goes or has gone well for you! We don't talk about it much to be honest but if they have questions I try to answer them as honestly as I can!
03-23-2011, 11:02 PM #5Registered Member
- Join Date
- Mar 2011
- United States
I am having the same issue
I am having this same dilema as well; how do I tell my daughter that I have MS? Tomorrow is my 12 year anniversary since I was diagnosed with RRMS. I was single at the time and frightened when first diagnosed!
I was on Avonex for the first year, Betaseron for years 2 and 3, but had to change because it was affecting my liver. I was on Rebif for two years after that and was very blessed to not have any additional lesions all during that time.
My neurologist and I decided at the time to stop taking medication. That was in 2004. I have been very blessed to not really show any noticeable symptoms, but I still have a slight numbness in both legs, but it does not affect my movement. I knew MS was there, but convinced myself that I was normal.
I recently noticed more weakness in my right leg as if my knee wanted to buckle when I walked, but it would only happen infrequently. I visted my neurologist and mri's show a new lesion and we think it best to start on medication this time using Copaxone.
My daughter was only one year old when I stopped taking meds for MS, so I have never discussed it with her, but she is extremely smart for an 8 year old and will notice the presence of the new medications in the house and will be inquisitive. My dilemma is how do I discuss this with her without scaring her? I want to keep her informed, but don't want to overload her with too much! My instinct is to be honest with her about any questions and educate her on my condition. I will speak with my wife tonight about this, but would appreciate any advice!
Bless you all!
03-23-2011, 11:19 PM #6
I have for 4 kids 3 girls and 1boy in that order...11,10,9,7. My husband and I called the MS society for a packet of info. I was to uspet cuz of the dx so he called for me. If you just tell them you have kids they are very helpful!
There is a book and video ( I thought the video was wierd at best) but the book was great. Its called Someone I know has MS A book for Families. They sent a 2 copies so we could read it with the kids and they also sent kids newletter called Keep SMyelin. You can sign them up for the newletter and they will get it a few times a yr.
You can look it all up on the ms website... nationalmssociety.org We looked at it all and then called and asked for the packet... 1800 fight ms or 1-800-344-4867
We waited for the packet before we told them all of the news. My kids are old enough to know that I was having all this testing done and that I was having a very hard time walking or moving in general. So we told them we where still waiting for the final result ( which was the packet from the MS society)
I hope this helps and I also wanted to let you know that you can stop into the chat rm anytime and talk about anything. If you stop in and the talk is about nothing MS related feel free to just say HEY I NEED to talk...and we all will!!! On thursday they have a parnet chat...could check that out to.
hope this helped and good luck
Ps I always leave the book and the newsletter out so that they can look at it anytime...
03-23-2011, 11:39 PM #7Registered Member
- Join Date
- Jun 2010
- Western Kentucky
I have 5 children ages 10 - 19 and I told them one at a time after i felt that I had a good grasp on the news. They all were aware that I had health issues prior to me telling them.
With the 3 oldest children I just told them straight out, "I have MS."
The 2 oldest are away at college most of the time so I am not sure they understand how much it affects every day. They try to be helpful when they are home.
My middle child chose a college in town. She lives on campus so that she can still expierence "the college expierence". She helps a lot. I think she has the best grasp of what is happening.
I went to a website and went through some activities to explain it to my 12 year old. She also really gets it and has been helpful.
My husband and I explained it to my 10 yo son but we are not sure he understands. He just knows that I am home more (my employer let me go when my MS progressed).
All of them understand the fatigue issue (the Spoon Theory has been a big help for my entire family). They also know that I have good days and bad days.
The main thing is they know that I am not going to die from MS.
We do make jokes about my being brain damaged. I also answer any questions that they have as honestly as possible.
03-24-2011, 12:08 AM #8
Do you want to be the one to tell them?
Or do you want your oldest daughter's cousin telling her. Yes, I do feel like ****, I'm still pissed, 1 1/2 years. My children were 5,7,9,and 12, my wife and I told both sides of the family but didn't know how to tell our children. Needles to say, we should have told our children. My two oldest we told and watched the video from ms org. We told the two youngest also, with a little more censorship. They all knew that something was kind of wrong with daddy. They just need to know that you love them and you'll live a long, happy, life. Be honest with your children and DON'T let them find out from someone else.
03-24-2011, 02:40 AM #9
The good, the bad, the ugly, huh? When I told my children they were 16 & 18 & 30 - the oldest one out of the house, but my middle child flipped! No support was offered and the 18 yr old didn't talk to me for weeks on end! In hindsight, I wish that I had some material for them to read or positive information to give, but I was freaked out myself and didn't even realize there was material out there for families. This was 12 years ago.
Long story short, my middle child and I finally did some counseling with a therapist. I learned the reason behind her anger and fear..... her father had passed just 8 years before and she thought that I'd was going to die too. She wanted me to be the main protector and here I was falling apart myself!
Life goes on and now my children are armed with lots of information about MS. They have seen the good, the bad and the ugly, but I still remain their protector and have given them a window to see life in all it's complexities with honesty while living w/ MS. They now are the ones always by my side to help and have shown a lot of compassion for others with challenges.
So, yes, it was ugly, scary and all at first. You didn't mention how old your kids are, but like others have said, a lot depends on how much they need to know and give them age appropriate information.MSWorld volunteer
Co-Administrator Message Boards/Moderator
Life does not have to be perfect to be wonderful~ Annette Funicello