Missing Out Is New Normal with Crohn’s

Missing Out Is New Normal with Crohn’s
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I first learned about FOMO, or the fear of missing out, when one of my students used it in an assignment. I don’t know if “FOMO” is still what kids say, but I thought about it again last week.

I received an email with a reminder of a photo I had long ago uploaded on Shutterfly, and I saw a Facebook memory shared by my friend’s wife. Both were from fall 2007, a little more than a year after I was diagnosed with Crohn’s.

The photo was from my uncle and aunt’s vow renewal ceremony. It was a bittersweet event because my uncle had been diagnosed with leukemia and was not expected to live to celebrate their 50th anniversary the following year. It was also the last time my mother and her nine siblings, who live in three different countries, would all be together.

I was there even though my Crohn’s was so severe that I had abdominal distention. In the photo, I can tell that my dress barely fit around my swollen midsection despite my weight loss. I had tried to disguise the bloating with a shawl, but I still looked pregnant.

After the celebration, I went to another uncle’s house to spend the night. I couldn’t wait to change into looser clothes. I remember the abdominal pain was so bad that I couldn’t enjoy visiting with all the family from out of town. Instead, I went to my uncle and aunt’s room to lie down.

My cousin, who is a few years younger than I am, was already resting there. She had recently given birth to twins, which led to Bell’s palsy causing temporary paralysis to one side of her face. With neither of us in the mood to socialize, we found solace lying side by side, catching up, and sharing our maladies.

A few weeks later, one of my best friends got married. This was the memory that popped up on Facebook last week. (When I first met my friend’s then-girlfriend, I warned him not to screw things up and to marry her.) Our entire group of friends was looking forward to their wedding, and I wasn’t going to let my health make me miss it.

The ceremony was short and sweet, but by the time the reception started, so had the abdominal cramping. Instead of helping myself to the buffet and open bar, I fixed a cup of hot tea and prayed it would settle my stomach. I forced myself to stay as long as I could, but as soon as the bride and groom arrived after taking photos, I congratulated them and apologized for leaving early because I wasn’t feeling well.

I remember driving home, tightly gripping the steering wheel because of the growing nausea and tightness of my belly. As soon as I got home, I dry-heaved and tried to force myself to vomit to get rid of the gas pressure building up.

When I couldn’t throw up — or even burp — I curled up at the foot of my bed directly under the ceiling fan. I alternated between tossing and turning to find a comfortable position and walking around to rid myself of the gas. At some point, my mom must have called to check on me. When she heard how miserable I sounded, she and my dad decided to drive from Oklahoma the following day.

These two memories are a stark contrast to the Humira commercials featuring a lead singer whose Crohn’s interrupts band practice and the boyfriend whose ulcerative colitis is interfering with his love life. I don’t know if it’s because of my background in advertising or because of my own experience with FOMO, but I believe the commercials have it backward. In the commercials, the woman’s bandmates and the man’s girlfriend and her family appear disappointed that the disease is ruining their plans. Even though the ads are told from the IBD patients’ perspectives, their stories sound guilt-ridden and self-blaming.

I was never upset with myself for missing out on the memories being made without me. However, I hated the disease that kept me from enjoying time spent with loved ones. Over time, I learned to live my new normal with Crohn’s without sacrificing fun or my well-being. In that process, I discovered a new term: JOMO, the joy of missing out.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.
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Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.

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