The Lies I Tell About My Gastroparesis Symptoms

I have severe idiopathic gastroparesis, a digestive motility disorder that delays gastric emptying. Basically, the majority of my stomach is paralyzed and I can’t eat without vomiting or doubling over with intense abdominal pain.

I have been lying about how I feel since I was 3. As anyone with a chronic disease will tell you, we tend to improvise and under-share when faced with the inevitable question, “How are you feeling?” on an almost daily basis. Having severe gastroparesis means constantly experiencing nausea, stomach aches, sharp stabbing pains, horrible acid reflux and frequent vomiting whenever I eat anything, even if it’s just a bite of a plain soda cracker or a sip of broth. I have had some variation of these symptoms for literally as long as I can remember. In fact, one of my earliest memories is from when I was 3, on a road trip with my older brother and parents, vomiting up a handful of plain Cheerios on the side of a busy highway in the middle of West Virginia.

When I was little, I would frequently complain I was too nauseous to eat breakfast or dinner; I would get full at restaurants after having a sip of the Shirley Temples my brother and I always ordered. The only meal I seemed to make room for was dessert, and that was more out of taste than hunger. My parents started giving me Gravol before any sort of car ride, even if it was just five minutes to school; I wasn’t allowed to drink anything when we went out for dinner until I had eaten at least half of my meal; I wasn’t allowed dessert; I had to eat my lunch in the school office so that the receptionist could watch me and make sure I ate something.

My school lunches became simpler, and by the time I was in fourth grade my lunch box was a collection of bland crackers, a thermos of Lipton chicken noodle soup and a red Jell-o cup. I remember jealously watching my friends eat chicken fingers and fries, pizza, brownies and chocolate pudding cups. When my brother got to eat a turkey sub and Oreos for lunch, I had two plain rolls and a small bag of animal crackers.

By the time I made it to high school, I had stopped pining for the foods that made my stomach hurt and had narrowed down what I could eat to a science. I would eat French fries, plain pasta and pretzels. When I turned 15, my parents stopped insisting I pack a lunch, instead giving me money to go out and buy lunch. I would get a plain bagel from Tim Hortons and an extra large coffee every single day. Some days I didn’t eat at all because I was throwing up too much or in so much pain I could barely stand. It was easier to tell my mom I had bought a chicken sandwich, or a hamburger, or a slice of vegetable pizza, than to rehash the same song I had been singing since I could talk: the truth was I could barely eat more than two bites before I would feel horribly full and bloated.

Now that I have been diagnosed with gastroparesis, I no longer need to cover up my strange eating habits or make vague excuses for why I can’t eat roast beef or tomato sauce. My family isn’t surprised to see me drinking broth or nibbling on a cracker instead of tucking into chicken wings and salad with them at lunch. My friends don’t question the meal replacement drinks and protein powder I haul with me to sleepovers. But I still lie about my symptoms.

I stopped explaining how my stomach and abdomen felt after eating or drinking anything when I was 8 because it never seemed to get me anywhere. My pediatrician would say I was underweight for my age, my parents would give me Gravol and I would inevitably choke down as much food as I could. I had a lot of “stomach flus” – weeks I would spend at home, vomiting and feverish, that we thought were infections but in reality were just undiagnosed gastroparesis flares.

Now that I’ve been diagnosed, I no longer have to explain away the frequent vomiting and bloating as the flu, but I do lie about how I’m feeling. Whenever someone asks, I say “fine,” but that doesn’t mean I have relief from my symptoms. I’ve grown accustomed to feeling sharp stabbing pains in my stomach, and if I wake up without nausea I am genuinely shocked. I would rather downplay or lie about my symptoms completely than explain that yes, I do feel nausea and stomach pain on a daily basis. It is easier for me to lie than have to explain that a chronic illness really is chronic, and it is easier for people without chronic illnesses to grasp.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.