Friday, July 27, 2012

Talking about multiple sclerosis with little kids


I'm going to start by saying that I am not an expert in child psychology and this piece is not based on any formal research. I am a mother of young twins and I am living with multiple sclerosis.

Like most parents, I am doing the best that I can. Some days I feel confident that I am doing a great job at raising my children. Other days, I wonder how it is possible that the majority of adults emerge from childhood as functional, capable people – I question everything, convinced that my every move could result in some sort of emotional impairment of my girls in their later lives. 

Mostly, I hover in between the two extremes, trying hard to portray and instill confidence in my girls during the day and replaying different interactions at night while they are sleeping, wondering what I could have done better.

However, one thing that I am proud of in my parenting is how I have handled the matter of my MS. I am not saying that my approach is for everyone, but it has worked out for our family pretty well.

Ever since the girls were about two and a half years old, I have been fairly open about my MS and how I was feeling. Of course, this was tempered and came across in those early years as "Mommy is a little tired and could use a nap. Does anyone else want a nap?" or "Wow. Mommy's feet feel a little funny right now. Let's sit down for a minute while those silly feet have the tingles."

Now I say things like, "My body is telling me that I need a rest. Anyone else?" (Still no takers.)

I did my best to explain the mechanism of MS to my girls when they were about four. This resulted in them telling people, "My mommy has a sick in her brain and has to hold the railing when she is on the stairs." This is (clearly) a work in process. They are almost seven now and I am able to explain the nervous system and demyelination a little better to them.

The girls are also aware that I give myself injections. There were some occasions when they were tiny that there was really no choice but to inject in their presence – it is not advisable to leave crawling or toddling twins alone for even a couple of moments. They didn't really pay attention then and don't really find it that interesting now.

Here is what I would say about my approach to letting my small children "participate" in my MS:

I make it a fact, not a drama. By this, I mean I tell them what I want to share in a matter-of-fact way, rather than an emotional confession. I don't think it's a good idea to set the stage by sitting them down and starting with "There is something that I need to talk to you about that might sound a little scary, but don't worry, I love you." Big announcements like this can make adults very nervous, kids even more so. I tend to share medical news in a low-key manner and then let them ask questions.

I use examples that they can relate to. Clearly, with small kids, throwing around medical lingo about paresthesia or ataxia will not get you very far. Instead, I gently rub a comb on the bottom of their feet or have them try to balance on an uneven surface to explain how I feel much of the time. They remember this and tend to be sympathetic when I bring it up later.

I remind myself, they are my children, not my spouse or friends. Although I say that I am honest with my kids about my MS, this is not entirely true. They get the rated-G version where everything will be okay and there are just some extra challenges that we have to deal with as a family. They don't know that when I say that I'm tired that I really mean that I feel nauseated and incapacitated from fatigue. Nor do they know that some days I get angry at the world and have my own childish "it's not fair!" fits. I can let all of these emotions out with other grown-ups in my world, but I truly believe it's important that kids be allowed to have childhoods that are as worry-free as possible.

Again, let me reiterate that this is how I have brought the fact of my MS into our family. I would love to hear from those of you who have done things differently, or similarly, and what the results have been. 

Resources for children & teens:
  • Keep S’myelin
    Colorful newsletter for children, 5-12. Articles, interviews, games, activities, and a special pullout section for parents. (Online version has interactive games.)
  • Someone You Know Has MS: A Book for Families
    For children, 5-12. A story about Michael and his family explains MS and explores children’s fears and concerns.
  • When a Parent Has MS: A Teenager's Guide
    For older children and teenagers who have a parent with MS. Discusses real issues brought up by real teenagers. 


  1. This is exactly what I have in mind for my son who is almost 2. Thanks for the tips

  2. Beautifully written Julie! I too have twins and MS and it can be a lot to handle at times. I thought I was reading my own words at times through your posting. Our beautiful girls are now 14 and avid fundraisers for BIKE MS as well as some of the most caring and compassionate kids I know. We are confident that comes from having a mother with MS as they have learned to be empathetic in many situations that most teenagers would scoff at. I would not change a thing about how we have chosen to share with them because we never wanted them to grow up in fear of this disease. MS took my dad at the young age of 48 and I was diagnosed with the same disease 8 years after his death. That is a lot to be scared of. Instead I have chosen to teach our girls that you can live life well with MS. As they rode by my side in last year's BIKE MS ride, 100 miles in 2 days, I knew they have gotten the message.

  3. Thanks for your blog Julie, this is a great way of explaining how to deal with small children and explaining M.S. My children are grown but I am now a grandmother of two small sweeties and when I keep them my fatigue can interrupt our good time quickly! I have often wondered how in the world am I going to explain M.S. to them without scaring them or possibly pulling them away from me. So far i have hid it from them. I know this is not right. I guess i have been waiting for the right age or time. But when is the right time? I know i need to address this at some point. Thanks again for your help! Take care, Christie

  4. Thank you so much for posting this. I do the same with my kids - I also have 5 yr old twins and a now 8 year old. The twins are just starting to know that I give myself shots and it's to keep my brain healthy. One of them likes to "help" me and gets me the auto-ject - I also have him point out a spot on my leg to inject and of course the spot he picks never hurts ;) My 8 yr old has permission to talk freely about it at school and he asks alot of questions about what it is - Thanks again for posting this!

  5. That's awesome that you did that...i was diagnosed about a year daughter was six...she knew mommy wasn't feeling well...and i didn't know what was going on either it was dificult to tell my daughter when i didn't know...but she is very smart and i kept her informed all the way through and it helped her and me. i woudl always say mommy needs another test. and when they told me. i sat down and i told her in child she understands great...and she's been supportive.

  6. I was diagnosed with MS 16 (!) years ago, before any of my kids were born. After my oldest was born my wife and I were not sure how to deal with letting her know. We had a dinner with a friend of ours who's father has MS and we asked her 'if you knew as a kid what you know now, how would you have wanted them to deal with telling you.' She had two rules that we have lived by 1) Never hide - it will give drama that you clearly don't want them to get and 2) Never go into a situation where you know that there help will be needed , I can't always turn down help when it happens but I don't go into a situation knowing their help is needed.

  7. Julie, great topic. My daughters were old enough to understand when I was dx'ed almost 15 yrs ago. Now they have explained to their children (ages 3.5 - 8)who understand that Nana sometimes gets very tired, too tired to play, or sometimes needs help in the house or walking or whatever and they are voluntarily so helpful and sweet. There are 3 boys and one girl (the youngest). They can't understand yet what MS is, but they do understand that Nana just can't be as usual some days and behave accordingly.

  8. Being on a long-term medication to treat and stabilize your MS symptoms is extremely important, even if your symptoms are mild. Data strongly suggest that the sooner you start and stay on them, the slower your disease progression will be in the long run.
    Linda Thomas

  9. We've taken a similar approach as you -- we keep it kid friendly and low key. Our kids are 7 and 4. Their dad's MS is part of their "normal" so they don't think much of it -- like when my husband got a scooter and the kids saw it simply as a tool to allow him to be more involved with the family.

    Thanks for the post! Such a pertinent topic!!!