World IBD (Inflammatory Bowel Disease) Day was on May 19—it’s a day when patients and caregivers reflect on their health battles with Crohn’s and ulcerative colitis. It’s a day to educate and spread awareness. It’s a day to pause and think about how the disease has impacted your life. Just like many people, I too shared a post on Instagram that day. Without thinking, I instantly went to my camera roll and thumbed through to find pictures of myself in the hospital.
All the posts I saw that day were much like mine—photos of tough times coupled with inspiring and thought provoking words. One post in particular really stuck out to me. I randomly came across an Instagram account for Laura Scaviola. On World IBD day she shared three pictures of herself smiling from ear to ear, looking strong and healthy as a horse. At first glance, I never would have thought she battled ulcerative colitis. The words that accompanied these photos struck a chord with me:
@mangiapaleo “Can you guess which picture was taken when my disease was flaring? Spoiler alert: ALL OF THEM. Inflammatory Bowel Disease (IBD) is often invisible. Sure I could show photos of me at my weakest, looking skinny in a hospital gown and needles in my arms. I have those photos, too. But the point here is the general public knows little of our struggles because they can not see them. Pictures don’t tell the true story and people with ulcerative colitis don’t always look or act sick. May 19 is World IBD Day—the perfect time to make our disease visible.”
This mindset and perspective really hit home. It made me stop and think of all the social events and work days I put a smile on my face while I was crying inside. It’s a fragile place to be—on one hand you don’t want to complain and come off like a sickly person. On the other hand, if you suffer in silence you create your own prison. No one can help you if you don’t speak up about what you’re feeling.
Here are some photos of me—that take me back and remind me of times I held my head high and kept my illness invisible to others. Here’s a quick backstory to correspond with each.
Photo #1: Each year my Greek family hosts a huge New Year’s Day party. I spent the entire get together on the couch, in a ball… in horrific pain. I started a burst of prednisone that night. By the photo—Bobby and I just look like a couple sharing a moment in front of Christmas tree, enjoying the holidays.
Photo #2: I was training for a half marathon and had just completed a nine mile run. I felt fantastic. After my run, I drove from Springfield to St. Louis…and started feeling very sick. That night, I was hospitalized with a bowel obstruction.
Photo #3: Just a typical day on the news desk, but I remember having to loosen up the belt on my dress because my stomach was hurting so badly during the newscast.
Photo #4: What started as a fun night out watching the Cards play at Busch Stadium, resulted in us having to leave in the middle of the game due to my stabbing stomach pains. In this photo we had left the stadium and the only “cab” we could find was a guy on a bike with a carriage to take us to our car. I was in so much pain I couldn’t even walk to the car. Our smiles tell a whole different story.
Photo #5: The food tasting for our wedding was supposed to be such a fun experience. Yes, we loved trying out all the different entrees with our parents months before the wedding. But in between each course and taste test I was running to the bathroom in embarrassment. I cried in the stall as my mind frantically thought—how the hell am I am going to be able to eat at my wedding and get out of dress in time to use the bathroom? Lucky for me, I didn’t end up needing one bathroom break the day of my wedding.
Photo #6: This photo is from three weeks ago. Several of my close friends came to town for a surprise bachelorette party. While my friend opened gifts that all-too-familiar gnawing pain started…I knew we had a long night ahead. Rather than go home and miss out on quality time with my girls, I popped a Tylenol with codeine and powered through.
The moral of this story—while you may think those who battle IBD are weak or exaggerating their symptoms—think again. There’s a pretty good chance there are countless times when they too chose to stand tall and smile, despite the pain. This goes for any type of “invisible” illness, whether we’re talking about mental illness, diabetes, you name it…just because someone isn’t in a hospital bed or “looking sick” doesn’t mean they are free of health issues and concerns.
From this point forward on World IBD Day and all the days in between, thanks to Laura, I too will choose to share different pictures of myself when trying to educate and inform others about life with Crohn’s.