How I communicate about MS with my children

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.
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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.