Tuesday, February 7, 2012

How I communicate about MS with my children

Julie Stachowiak, PhD
Writer, ms.about.com

I have twin girls who are now six years old. I was diagnosed with MS a couple of years before they were born, so it has always been present in our little family. I guess there was never a question whether or not to share my MS status with them – it was too big to hide.

One of my first memories of the girls really understanding that I wasn’t entirely well was an incident where I was reduced to tears when one of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.”

The experts will tell you (and I can confirm) that young children pick up on the fact something is wrong when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Children who are a little older may get worried that something terrible is happening – that their parent will die, that they will die, that they did something terrible and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school.

Those same experts say that we should answer all questions about our MS honestly and directly, adjusting the information as they get older. That might, or might not, work for you. I know that some people choose to keep the fact of their MS from their children until they reach a certain age or something happens where it must be revealed, the thinking being that they are letting their children have a good shot at a normal life, without the pervasive worry of having a sick parent.

I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do – I cannot tell you that you must be open about your MS with your children. The only thing I can tell you with 100% clarity is that it is impossible to show your children too much love.

As far as my situation goes, I have chosen to be very open with my daughters (in an age-appropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss multiple sclerosis and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or being outside in the sun for too long.

I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They also are not afraid of people who are different and easily talk to people with different situations – we have friends with Down syndrome, in wheelchairs and who are hooked up to oxygen – my girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that.

What about you? Have you told your kids about your MS? Why or why not? Share your story with us.

Society resources for families:


  1. We have chosen to follow the same course. Both of our boys, ages 12 and 4, are included in MS Society events, encouraged to share in my celebrations, and mostly aware of my limitations. I suppose my thinking was/is that MS is something that involves/impacts our entire family unit...not just me. We are a *family,* and we need to help each other and be there for one another. I also feel like it is important for children to see that a diagnosis or disability (or even more simply: disappointments) does not have to mean you enjoy life less and/or have to be devastated. I want my children to be fighters...and to have an "internal locust of control." How we respond to MS in our lives is so very important to the outcomes we have with MS. Thanks for addressing this subject...such an important topic for us mamas with MS!

  2. My 4 year old daughter said the exact same thing to me “Here you go, Mommy. I’ll take care of you.” It broke my heart and I immediately pretended like everything was ok. How do you explain it to a 4 year old?

  3. I chose to share with our three children. My initial reaction was to hide it, but that seemed to take a lot of effort. My twins were 4 and my oldest was 8. It's hard for them to grasp sometimes; but then again,it's hard for me to grasp sometimes. They are compassionate kids to begin with and I think this experience makes them even more so.

  4. My (almost 5 yo) daughter, Mya, and I live with my parents. My mom has had MS since the early 90s and it has progressed quite a bit. We have never hidden the fact that my mom has MS from my daughter. I'm not sure that it was ever really an option, but I still think if my mother was able to take care of herself, we would have shared this info with her. She is quite the helper and it is very important to her to be a helper in our household. One of the benefits that I've also seen is that Mya is far more compassionate and understanding of people she encounters who may be disabled.

  5. I enjoyed reading your blog and it brought back clear memories of the day I told my kids (6 and 8 at the time) that I had MS. When I worried about how they would react, a psychiatrist told me it will depend on "how" I told them. He said to try to be realistic and reasuring, not fearful.
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  6. Although it was many years ago, I still remember my dad telling me, at age 10 or so he had MS. He told me he would not die from it and that none of us kids would ever get it. I believed it wholeheartedly. So, when he did die less than 4 years later, I was destroyed. Then a few years later my younger brother was dx with MS and few years after that, me. I know times have changes with meds and all, but itis still a fact that progression can come on suddenly at any time. My brother passed away last year at age 40, my dad was 41, me I am 46 and still going. It's hit or miss and children should be aware of this in some form...

  7. When I was first diagnosed with MS there was a brief moment where I just didn't want to think about it. A small part of me thought if I don't think or talk about it then I wouldn't have it. I have accepted that I have MS. I am actively treating it and my family is a big part of that. I do my injections in front of my kids so they don't think it is "Scarey" and we participate in the MS walk, this will be our 2nd year. My children are 1 and 4 and when they ask questions I answer them truthfully. I think there is no reason to hide this from them.