"You don't look sick."
Those words make me so angry. They shouldn't...when people say them, I'm sure they mean well. Instead of making me feel joyful that "Yay, I don't look sick!" I want to strangle them and make them live with my Crohn's for one day. Even when I had surgery, years ago, I remember someone saying that and I answered "Well, L'Oreal sunless tanner truly helps." I had no tact, haha.
It is very difficult to express what it is like to live with this disease. My mom sent me "The Spoon Theory" written by Christine Miserandino, and it is a beautiful example. Christine lives with Lupus and she has figured out a way to describe her life, very eloquently and effectively. Please read it!
I want to give one example...and it's not even a thorough example cause it only embraces a few hours of my life.
Last Saturday night, after visiting with my family in Massachusetts, I packed up the two babies and two dogs to drive back home- a 2 hour trip. In my Toyota Corolla at 8pm, baby bedtime, all small creatures had starry eyes and I was hopeful. About 35 minutes in the trip I felt that I needed to go to the bathroom. No surprise, but there was slight panic in my belly. It's ok, maybe it will pass, I thought. The next 20 minutes were up and down but then, instead of the feeling passing, the white-knuckled, I need to get to a bathroom NOW feeling was getting more intense.
I had made good food choices all day- I knew I would be driving this distance. I only drank water, I didnt have anything with lactose, no processed foods, no gluten...why is this happening to me? A sarcastic voice in my head tells me that my angels are gambling tonight- they are taking bets on whether or not I will make it to a bathroom in time. They must be bored.
It is dark out, I am driving along the highway, somewhere in CT, babies and dogs are sleeping. There is no one to wait in the car while I take a random exit and run into a gas station or a Dunkin Donuts. I do not have family or friends along this trip whose houses I can pop over to. I look around the car...I see a fleece blanket- I could sit on that. I have burp cloths in the diaper bag, I could sit on those. I could pull over, but it's dark out, I would be too scared, there are no lights on this highway. What if another car stops? What would I do? I am unarmed...and my dogs are pushovers.
I have been driving like this for 40 minutes now (amazingly I did not have an accident) and I am crying silently. One baby is sleeping, one is wailing, I cannot sing to him, I cannot soothe him, I cannot even tell him it will be ok, because I do not know that it will- I am willing myself not to let go. My jaw is clenched so hard no sound can come out. Maybe I could find a police officer and explain my problem and he could stay with the babies for a moment? What if I run into that Dunkin Donuts and ask for a fellow Mom to help me...that is dangerous, you never know who anyone is...He stops wailing and has fallen back asleep. But his tears are my tears.
I know I am approaching a mall and shopping plazas. It is 9:27pm now. I quickly roll through all the businesses in my head- Babies R Us, Michaels, Best Buy, the mall food court, Target...could I even get the stroller out and load the babies and make it into their bathroom? I will need to wake the babies up. Damn, I hate waking the babies up! They will be so mad. I think of how well set up Babies R Us is for moms and babies, conveniently they are on my phone, so I call, but they close at 9:30pm. Target? I know where the bathrooms are in this Target! What time do they close, without thinking I pull into their lot, drive by the doors- 10:00pm! They do not close until 10:00 pm!!!
Of course, the first available space is 50 yds away- why is it so busy here on a Sat night?! Practicing my deep yoga and meditation breathing, I take the double stroller from my trunk, I wake and load two screaming babies. Everyone is crying, we must look ridiculous. I briskly walk into the store and...I made it.
Upon exiting, babies still screaming, I am thinking about whether or not I need to go again. No, I just want to get home. I am rocking babies in my arms in the parking lot, trying to load them into their car seats without the dogs escaping. A man walks by me, he looks to be about my age, and says "It will get easier." I still cannot speak, and I simply nod. Apparently, my angels felt terrible and had to send me a hopeful message.
This is not the first time something like this has happened. It is not the last. In fact, a version of this scenario happens almost every day. I am not embarrassed to talk about it, this is my reality.
So yes, thank you, I don't look sick, in fact, I look very good! If you didn't know that my internal organs were waging war with each other you would think I had not a care in the world... outside my husband, my twins, my dogs, my career, my house, my car, my...shhhhhhh, if I start worrying about all of that I will need to go to the bathroom.
