When It Feels like the Whole World Is Clueless

When It Feels like the Whole World Is Clueless

April 17, 2017 | Posted in: Chronic Life, Parenting and Chronic Illness

When I was young and brave or stupid, you decide, I flew to Dallas for Thanksgiving to visit family just as I transitioned into my second trimester of pregnancy. It was my first, and I was violently ill most of the time. If memory serves me correctly, I was twenty-one years old, sixteen weeks pregnant and signed up for a six-hour-drive followed by a four-hour-flight with twenty-four-hour morning sickness. What could go wrong, right?

Obviously, the flight was torture. I clutched the barf bag the entire flight. My back was racked with unbearable spasms, and I had to pee every-seven-seconds. The problem was, I was still quite small. No one could tell by looking at me I was growing a tiny human who was hell-bent on punishing me every moment of the day.

While waiting in the line to use the airplane restroom, eight people deep, I happened to rest my hand on my stomach and begin to rub rather soothingly, in that “there, there, little one, mommy loves you, now please stop trying to make me vomit” sort of way pregnant women sometimes do. A wave of recognition washed over a woman at the front of the line. My pale face, my constant restroom using, my belly rubbing, it all made sense to her, and suddenly she apologized and ushered me to the front of the line. I’m not sure I’ve ever been so grateful to anyone for anything. One simple act of rubbing my belly had widened my circle of understanding and empathy.

I can’t help but sometimes wonder if it’s the same with rare disease and chronic illness. My five-year-old daughter will tell the cashier at the grocery store about how  “Mommy has a broken ‘mune system, the thing that fights germs, but hers is berry strong.”

Yet, she still brings her neighborhood gaggle of friends into the house when half of them are coughing like they might have the plague.

How do I widen the circle of understanding among neighborhood moms, preschool moms, the world in general when my incomplete immune system isn’t always visible to the naked eye?

While it’s true, I have considered custom printing a t-shirt to wear to preschool pick-up that explains my overwhelming fatigue and germ phobia. This way maybe the other moms will understand my lack of participation in the latest legging chatter or volunteer days in the classroom. But like the mass text I’ve considered sending to the neighborhood moms about sending sick kiddos over to my house, it feels a bit impersonal. And just how many people do I want to know the intimate details of my body?

I’m currently recovering from surgery. My doctors have stressed the importance of not getting sick during my recovery as it could lead to additional surgeries. I’ve attempted to explain this to my children in age-level appropriate ways. I wish I could say it’s brought an end to neighborhood children appearing in my bedroom asking if they can have a Capri Sun from my fridge. It has not.
How do I widen the circle of understanding? Click To Tweet How do we widen the circle of understanding when what we need isn’t always visible? And just how wide do we want the circle to be? I’m still working through the answers and working on my custom print t-shirt over here. I’d love to hear how you’re widening the circle of understanding in your world.

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  1. Jodi Sewell
    April 19, 2017

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    Hey Stacey, it has been futile for me to try to get everyone to understand so I am learning to be more direct with asking for what I need, and explaining less. I have had to let go of how it appears to others and that has been the hardest part. This is such a tough journey and my journey has led me to simplify and rest, accepting my limitations and celebrating any and every victory. There are just a few close people who see me and my struggle, and it has been more about me being OK with me and staying hopeful for more. I see you and honor your struggle and your journey.

  2. Ana
    April 20, 2017

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    The judgments after doing just that, Jodi, are what is hardest for me.
    I use to be the giver. The enormous amounts of humble pie becomes almost vomit inducing (like Halloween binging only it’s regularly instead of yearly). I’m not a people user but I get labeled one. That’s almost as painful as my physical pain.
    I cope by doing all I can, giving myself credit, and hoping for a day when I’ll be better!

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