Wednesday, September 20, 2006

Talking About MS

I am looking for some input or feedback from readers with MS on this, especially those of you with younger children. I have grown quite comfortable with talking about MS with just about everyone, however my 8 year old daughter, Katie, knows I am "sick" but we have not talked to her about MS.
Our older children know, we are kind of a modern day Brady bunch with a mix of mine yours and ours,Katie being ours(yes there were 6 kids just like the show, we were a tad more disfunctional than the Brady's though) With Katie being 8 and a real "mother hen" type already I have not as yet shared with her what's wrong with me. I struggle with this, scared she will here the wrong information or gather bits and pieces from her older siblings and conversations she hears but not sure if she is ready to understand something that some days I still struggle with completely understanding.
What has been your approach to sharing your story with younger children? Or is it best to leave her out of the MS conversation? I know its personal choice, I guess I am looking for feed back or guidance on how to handle this. My fear in not sharing with her is having her find out the wrong information some place else! Any feedback or suggestions would be greatly appreciated!

10 Comments:

Blogger mdmhvonpa said...

Wll, you could be like my mother and hide it for 20 years and only spill the beans when the child is found to have MS ... orrrr, you can take her to an MS event like the MS150 and explain that a bunch of the ppl running the race have MS too.

4:46 AM  
Blogger Multiple sclerosis and me said...

I guess the question was more at what age should I tell, the older children have already been told, my son as well. At 8 I am just not sure she is equipped to understand it.

4:49 AM  
Blogger Ann Escosa Griffin said...

DereK:
Though I am limited by my experience with MS, I do have some understnading of young children and health issues.

Perhaps we should be talking about dis-ease as opposed to sick. Just a thought from an old public health/recreation devotee!

Health and wellbeing are a continuum...for all of us.

Ann Griffin

1:18 AM  
Blogger Ann Escosa Griffin said...

Derek:
Though I know very little about MS, I do know a bit about children and their amazing powers. Imagine for a moment that you are DIS-eased instead of sick. I'm a human who believes that health is on a continuum.

I know that for under a $1 a day you could provide her with everything she needs do be the one of the less DIS-eased persons in your family...perhaps the discussion could begin with how powerful she feels.

HotMAMAann!

1:27 AM  
Blogger Multiple sclerosis and me said...

Thanks for the feedback Ann i am greatful!I have decided to share with her whats going on this weekend, my next post will be all bout the conversation, her reaction and mine

2:29 AM  
Blogger Miss Chris said...

I hid my illness from my daughter for about a year. She was 5 when I was diagnosed but I know she wondered why I was tired all the time or why I had a knee brace on. I finally told her...in the simplest terms.She wasn't scared or worried. I think just happy to know mommy was going to be okay. I also told her that if anyone said anything to her about M.S. to check with me to see if it was correct. I told her people think they know alot about it but in reality, they don't.

6:41 AM  
Blogger Miss Chris said...

Also...maybe you could help me with a m.s. question of my own. I wrote about it today and could really use feedback. Thanks!

6:43 AM  
Blogger Charles-A. Rovira said...

Denial doesn't help.

I did it for about 30 years.

The first fifteen years I didn't know actually I had it so I might be forgiven. My handwriting went to hell in a hand-basket when I was fifteen. (I even remember remember sitting in Mr. Miller's history class as it was happening; just staring at my right hand.)

The next fifteen years was pure ignorance.

Until my next episode. Then after five weeks in hell at the Ottawa General Hospital, when I'd recovered I just went on being a closet gimp.

Don't knock it until/unless you've tried it. I accomplished a LOT and after that first officially diagnosed episode.

(Un)Luckily for me that is not an option.

After the last serious episode, in 1997, I was left using a cane.

I decided to paint my cane red, the color of warning in nature, I have come to terms (finally) with my MS.

Now I shamelessly use it; to get a seat on public transportation or any other situation where I don't want to waste my limited energy standing around.

MS is an auto-immune disease. Its neither our fault nor is it anything to be ashamed of. It just is.

MS sclera result in noise on the nervous system which we experience as all kinds of spasticity (on the motor control neurons, like I said I use a cane) or 'phantom sensation' (on the sensory neurons, my feel are always cold.)

I hope you'll come and check out my podcast at MSBPopdcast.com and give me some feedback.

5:20 AM  
Blogger Charles-A. Rovira said...

Denial doesn't help.

I did it for about 30 years.

The first fifteen years I didn't know actually I had it so I might be forgiven. My handwriting went to hell in a hand-basket when I was fifteen. (I even remember remember sitting in Mr. Miller's history class as it was happening; just staring at my right hand.)

The next fifteen years was pure ignorance.

Until my next episode. Then after five weeks in hell at the Ottawa General Hospital, when I'd recovered I just went on being a closet gimp.

Don't knock it until/unless you've tried it. I accomplished a LOT and after that first officially diagnosed episode.

(Un)Luckily for me that is not an option.

After the last serious episode, in 1997, I was left using a cane.

I decided to paint my cane red, the color of warning in nature, I have come to terms (finally) with my MS.

Now I shamelessly use it; to get a seat on public transportation or any other situation where I don't want to waste my limited energy standing around.

MS is an auto-immune disease. Its neither our fault nor is it anything to be ashamed of. It just is.

MS sclera result in noise on the nervous system which we experience as all kinds of spasticity (on the motor control neurons, like I said I use a cane) or 'phantom sensation' (on the sensory neurons, my feel are always cold.)

I hope you'll come and check out my podcast at MSBPopdcast.com and give me some feedback.

5:22 AM  
Blogger Multiple sclerosis and me said...

Charles I will definately check out your Podcast and provide some comments!thanks for stopping by and please check back

5:42 AM  

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