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Why Gastroparesis Makes It Difficult to Have a Social Life

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In America we take eating for granted. When we are born, our mother’s provide milk to help nourish us, help us grow and build strength. Then as we continue to grow up, food begins to be associated with socializing. In grade school we bring treats in to celebrate birthdays. No parent ever organizes a vegetable platter to bring in for second graders; instead it’s donuts, cakes and cookies. As we continue to grow up, we organize grabbing dinner with friends or meeting friends at the local snowball stand. We go to college, where orientation uses food to entice students to join various clubs and sports and students use food to bond with their dorm mates. When returning home on breaks, students use food and alcohol to reunite old friendships. After college graduation, “happy hour” becomes a common phrase amongst the new working force as a cheaper way to eat and drink. When we move into our first home, neighbors bring over casseroles to welcome you to the neighborhood. When we are sick, friends bring us soup to show us sympathy.

 Jamie in February 2016 taking a selfie in the mirror with her port.
Jamie in February 2016.

What if you couldn’t engage in all of these social events? What if your stomach was paralyzed, meaning you suffered from gastroparesis? What if you had to know every ingredient you put into your mouth? I was first diagnosed in February after months of suffering from frequent vomiting, diarrhea, or constipation. Ever since I had meningitis last summer, something just wasn’t right. I am always nauseous and in stomach pain.

Since going to Paracelsus in Switzerland my symptoms have shifted from vomiting to severe constipation. I have been hospitalized at least 10 times this year alone, many of which were for constipation. When I’m hospitalized, they usually have to use an NG tube, soap sud enemas, colonoscopy preps and magnesium citrate. That is in addition to the Miralax I take four times a day, Colace, Senna, Linzess, a prescription laxative and colonics. No, these are not suggested for long-term everyday use, but right now I have no other options.

Additionally, due to all the inflammation in my stomach, I am practically allergic to everything. I can’t eat dairy, gluten, or eggs. I was gluten-free before and it was doable, but now I’m on a pretty strict diet. A staple item in my diet is soup, but it’s difficult to eat in the summer due to the already existing heat. The other items include bone broth, well-cooked veggies and some animal protein. I was eating salads, but learned it is one of the most difficult foods to digest for the stomach.

Jamie with a bloated stomach
Jamie in May 2016.

It’s very isolating not being able to partake in social events because they surround food. I don’t like to be the person asking the waiter or waitress, “does this contain gluten?” “Hold the croutons,” or “is the soup of the day a broth or is it creamy?” It gets old and I find it a nuisance when I’m out with friends. Eventually when you’ve turned down social event after social event, your friends stop inviting you — even if it doesn’t involve food because they figure you’ll turn it down. However, I try my best not to avoid social situations, even though I have an invisible illness. I believe it’s much better to go out and be surrounded by people than isolated at home.

The tricky part of the gastroparesis puzzle though, is my weight. Last summer I was the heaviest I had ever been, but then I started drastically dropping weight from September to February. I was very self-conscious as to how much weight I was losing and just how quickly I was losing it. Numerous friends thought I had an eating disorder and even asked me about it. The truth was I didn’t even know what was happening to me. Then in March/April I switched from constant throwing up to being constipated often. Over the past few months the cycle seems to be that my stomach looks pregnant and bloated. Once again, I found myself extremely self-conscious. I have a strict bowel regimen and even then, sometimes it’s not enough to keep me out of the hospital and not bloated.

Chronic illness is lonely especially when there is no cure at this time. During this whole time I tried to keep a pretty normal social media presence, but no one really knew what I was going through. Based on an Instagram post you can’t tell what symptoms a person may be struggling with. The moral of the story is, “People generally see what they look for and hear what they listen for. It is easy to make assumptions about situations you know nothing about.”

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 11, 2016
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