Please Don't Skip Over the Stories About IBD You See This Week
Today is the first day of Crohn’s and Colitis Awareness Week.
I spent the majority of the day in bed because of the pain and bathroom trips that kept me up last night, leaving me exhausted and still in pain today.
I’m like any other wife and mom. I have two kids and a great husband. I pack lunches, do laundry, sign agendas.
But I’m also very different from other moms.
I have a port in my chest for infusions and other medications and can give myself fluids when I get dehydrated to help cut down on emergency room visits. I have nurses in my home once a week, drawing labs and accessing my port taking my vitals. Sometimes they’re the only visitors I have all week.
My kids know Mommy is tired and Mom’s tummy hurts. They know that when I say, “Bathroom now!” I mean run in the direction of the nearest one.
Every three months I leave my family and drive over two hours to see my IBD specialist. If I’m lucky it’s a short trip. When I’m not lucky it involves tests, barium drinks and surgical consults.
In fact, the whole family is making a trip to the University hospital with me in a few weeks. Instead of Christmas lights and Santa festivals, we’ll be at a hotel room near the hospital, so I can have some more tests done. My husband will do his best to distract them from the reality that surrounds them.
I’ll put on a brave face and smile…
Tell them, “I’m OK, this is nothing, a piece of cake.”
I’ll try and hide the pain and pretend I’m not scared as I kiss them goodbye from the pre-op room. I won’t tell them about the loss of dignity or embarrassment that goes along with this disease or what’s needed to treat it.
Sometimes you’d never know I was sick. There’s nothing more frustrating then hearing those words: “But you don’t look sick.”
I know people mean well, but they can’t see the battle that’s going on in my body.
So this week when you’re scrolling through your feed on Facebook or Twitter, don’t skip over the purple ribbons or stories you see. Take a few minutes and learn a little about these debilitating diseases.
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Lead photo by Thinkstock Images