Telling my kids

I was browsing a brochure recently about how to tell your kids you have MS. It reminded me of advice I read once on a completely different topic - how to tell your kids about sex.

Really, the advice was pretty similar. Make it age appropriate, don't give them more information than they need, and focus on answering their questions rather than telling them everything at once.

That's the way I handled both subjects with my kids. I guess it's more or less worked. That and the internet, I suppose.

My kids were pre-teens when I was diagnosed six years ago and are now on the cusp of adulthood. I told them little to nothing in the beginning as I was dealing with my own need for information and my own fears. How could I reassure my kids when I was afraid I would start crying in front of them? Little by little, my husband and I made MS a more common topic around the household. The kids got used to hearing things like "I'm a little worn out today - MS is acting up" or "I'm going to the dr to see what's going on with my MS."

At first, there was little reaction at all. Then, the challenge, "What's MS?" And I would answer very simply: "It's an illness that I have. It makes me tired." If they didn't ask another question, I left it at that. At some point along the way, though, another question would follow: "Why does MS make you tired?" or "Why do you always have MS?" I would answer in as simple terms as I could.

I remember one time I launched into an explanation that included words like "lesions" and "myelin" and my kids quickly tuned me out. That was obvious, because as soon as I finished my little speech, they asked something like "What are we having for dinner?" One time, my son - maybe 14 at the time - asked a question, listened seriously to the answer and was quiet for a moment. Then he responded, with a very thoughtful look on his face: "Mom, that's really interesting. And I don't mean to be rude, but do you mind if I go to my friend's house now?"

They aren't unthoughtful kids. They're kids.

The learning process for them has happened over time. The most important tip I can pass along comes from my own mistake. For too long I tried to cover up how I was feeling in front of them. I didn't want my kids to see me hurting. I was afraid that they would be frightened to see me in pain.

One time, I fell and couldn't get up by myself. My kids were with me and I kept reassuring them that I was fine. I joked and made light of the situation -- so much so that even my husband questioned whether I really needed help. In amazement, later, he said "But you acted like you were ok."

That was the breaking point where I realized I was spending a huge amount of energy pretending to be ok when I wasn't. I was pretending to be someone else. That was a couple of years ago.

It was shortly after that when I started talking very openly in front of my kids about having MS. It was on my mind a lot so I brought it up a lot. Instead of waiting for the questions, I integrated talk about MS into my conversation. It wasn't in a complaining way. Instead, I welcomed it into our household instead of holding it at bay. If I didn't feel like making dinner, I didn't think twice about saying "Looks like peanut butter and jelly sandwiches on your own tonight." If I was struggling to understand a rapid-fire, meandering conversation among family members, I would speak up and tell them to slow down.