When Other Parents Think You’re Lazy
By Christine Brovelli O’Brien
Do you ever just want to scream out to the world, “I have MS! Give me a break! I may look fine, but guess what – I’m not!”
Multiple sclerosis is referred to as an “invisible disease” with good reason: Many MSers appear “normal” (whatever that may be) and healthy to the untrained eye, when in fact we are coping with various health issues and other obstacles.
And no one knows until you tell them.
As I mentioned in my first blog post for Race to Erase, “Trusting Your Instincts,” I did not share the news of my illness with some friends and neighbors, people whom I spend time with on a daily basis, until a year after my diagnosis.
I kept the news hidden because I didn’t want anyone to treat me differently. But since I’ve opened up about having MS, everyone has been so amazing that I wish I had shared the information with them sooner!
They treat me as me, but they are mindful that I have some limitations. Seemingly minor gestures, such as giving me the patio chair that doesn’t face the sun, mean the world to me.
What I’ve discovered, however, is that it’s not so easy to navigate the world of parenting when I am out and about with my three-year-old daughter, surrounded by moms whom I don’t know very well.
That’s when the urge to shout comes up.
First of all, I should tell you that I have optic neuritis in my left eye, which has healed fairly well, and I also deal with sometimes crippling fatigue, but for the most part, I’m ok. Once in a while, I’ll have issues with numbness in my arms or legs, but nothing that is outwardly noticeable.
If you look closely, though, you’ll see that sometimes I don’t walk in a straight line, especially when I’ve been moving around for a while. Or, I may not seem “focused” because when I become overwhelmed or stressed out, my thoughts become really scattered.
This why I choose child-related activities for my daughter and I which don’t demand a lot of exertion. As I wrote in my recent post, “Toddlers and Fatigue Don’t Always Play Nice Together,” it’s not always easy to deal with a little kiddo under normal circumstances, let alone when you have MS!
Story time at the library, for instance, is one our favorite activities. My daughter and I both are bookworms, and the book-related crafts that we do every week are a lot of fun. But there are times when I just can’t sit cross-legged on the floor with her in my lap, and I have to rearrange my legs. Or, I can’t (gracefully) stand up from a sitting position on the reading rug.
Just the other day, my daughter tried to stand on my leg, putting all of her weight onto it. I had to remove her and explain quietly that she can’t stand on my leg because I’m not strong enough. Another mom saw me take my girl off my leg and gave me a funny look; because she didn’t hear my explanation, this mom probably assumed that I am lazy and don’t want to play with my kid.
That’s when I want to yell, “I have MS! I want to goof around with my daughter, but I can’t always do it!”
I’ve experienced similar moments at the park, too, when I’m unable to chase after my daughter because she’s simply too fast. In some people’s eyes, I appear lazy, especially when I sit down and call out to my husband, “There she goes! Catch her!”
Despite appearances, I’m not leisurely lounging under a shade tree while ordering my husband around, even though that’s exactly what it looks like. I’m tired. I’m overheated. My legs simply can’t take me as fast as I want to go.
I’m sure other MSers have experienced similar situations, and I’m curious about how others handle it. So far, no one has said anything to me about it, but the judgmental looks get to me. For now, I just take a deep breath and remind myself that perhaps they, too, are dealing with something “invisible.”
And then I move on!
Christine Brovelli-O’Brien is a writer, mother, former English professor, and MSer. Her work also appears regularly on the What to Expect When You’re Expecting Word of Mom blog. Follow her on Twitter: @brovelliobrien