I have Lupus. Don’t feel bad if you’ve heard the word but don’t completely understand what it is. That’s pretty common, in fact that is how I was right up until the day that I was diagnosed. In short, Lupus is an autoimmune disease that causes my body to attack itself because it can’t recognize what is healthy and what is not. Worst part is…there are very few visible signs. How do you take an explanation like that and explain it clearly to a child?
“Mommy isn’t feeling well today” is how it began with my oldest. While this answer worked in the short term, I really wanted to explain my illness in a way that they could comprehend. My disease is something that typically isn’t seen, so communication is key. Some days we may have a slower pace to get from point A to point B, and that’s okay. Tortoise always beats the hare, right? Maybe in fables.
Eventually “mommy isn’t feeling well today” just didn’t cut it. “Why does mommy not feel good” he would say. I decided it was time to just open up and talk direct to him and try to explain in some more detail.
“Honey, I have what’s called Lupus.”
“You have Lipstick?” he said
“…Yes, mommy has lipstick.”
He doesn’t quite get it yet, but at least the conversation has begun. To be fair, mommy wears lipstick a lot, so I can see how he would try to make the connection with a foreign word to something he sees often. He is beginning to understand that some days mommy feels okay and we can have a super active fun day while other days may be more of a struggle. I am seeing more and more compassion come from that little heart of his. I want that for my kids. Not everything we face on a day-to-day basis will be a visible enemy and maybe watching mommy go through this at a young stage will give my children the ability to see struggles in others and help them in a way others can’t.
Eventually, they will understand.
Eventually, we can answer their questions in detail.
Eventually, they will know that, although mommy doesn’t feel good, she will always work through the pain to be there when they need her.
My husband and I are high school sweethearts. We married in 2005 and attended college together. I’m a mom of two boys, a blogger at DeannaLayman.com, owner of VivaLaPies.com, an online pie bakery and a Lupus Fighter diagnosed in 2012. I love traveling, coffee drinking, homeschooling, board gaming and Netflix marathon-ing. Best at falling asleep during my favorite TV shows.