25 Things People Don't Realize You're Doing Because of Gastroparesis
Here at G-PACT we are patient centered. We are run by patient volunteers and exist to be an advocate for better treatments and a cure for gastroparesis. The question given to us by The Mighty was, “What things do you do that people don’t realize is because you have gastroparesis?” We posted this on our Facebook page asking our community for their personal answers. G-PACT feels that this question was important because it allows our community’s voice to be heard about life with gastroparesis. One question asked is not enough to bring about a cure but working as a community to bring awareness one small step at a time is how one day we will have better options for our debilitating digestive tract motility disorder. We want to thank The Mighty for giving us this opportunity to be heard and for all those in our community that asked the question of themselves or of their child. Below are 25 answers to this question from those with gastroparesis.
1. “Sometimes I am really full one day and can’t eat anything because my stomach still has food in it, and the next day I overeat because everything emptied over the last day, and it just continues in that cycle.” — Bethany P.
2. “In order to go out to eat I have to prepare myself a few days ahead of time, by not eating anything that may trigger an episode. Basically clear liquids…all so I can have the chance to enjoy a day/night out. Which I still might have to cancel.” — Jenn S.
3. “I forget to eat because I don’t get hungry… people think it’s ‘cool’ and wish that they had gastroparesis too because they are always hungry but they don’t know the whole story.” — Katie D.
4. “Having to eat really small portions frequently throughout the day (at work), like eating half a Greek yogurt, putting it back in the fridge, and eating the rest a couple hours later. I have to try and keep calories of any kind down without pushing my stomach too far! And… Because I’m bloated and having to get sick in a public restroom, please don’t ask me when my due date is!” — Lauren S.
5. “Rigorously checking the backs of food packets for nutritional information and ingredients. Unfortunately this can get misinterpreted as an eating disorder behavior. It’s not, I’m trying to decipher whether it contains anything that could make it dangerous for me to consume. I have to be so careful what I put into my body. One mistake can leave me bedridden with excruciating pain, nausea and vomiting for “hours, if not days and/or requiring urgent medical care in A&E.” —Aimie R.
6. “Suddenly going quiet mid-conversation because I’m trying to physically stop myself from vomiting.” — Aimie R.
7. “People bring home baked goodies to gatherings and take it quite personally when you don’t try them. I constantly have to expose my illness to people if I don’t want their feelings hurt. It’s frustrating to have an invisible illness that affects you so publicly and socially!” — Toni P.
8. “Avoiding social events based around food. Not even because of the food itself, but because everyone at the table suddenly becomes an expert and starts suggesting things on the menu for me. The menu that I already read and determined has nothing I can eat. Then they act offended when I don’t accept their ‘helpful suggestions.’ Every single time, no matter what people I’m with. They don’t want to accept that I can’t eat and they make me feel singled out and judged. If they could refrain from trying to make me eat, I would have no problem joining them and sipping my tea while they eat.” — Zhani A.
9. “When I go out I plan ahead and find out where all the bathrooms are in advance in case I have to run and vomit. I carry opaque plastic bags so that I can duck behind a corner or a tree and hide it in my bag until I pass a trash can so no one will notice.” — Yvanna S.
10. “Being so very gassy….flatulence… I’m not a rude slob, it just happens at the most inopportune times.” — Angela D.
11. “I keep an old Tupperware and grocery bags in the car for those moments when I get sick.” — Janine V.
12. “Carry a backpack everywhere. It surprises me how many adults don’t notice that there is a tube running from my backpack up into my shirt. They just think I’m weird and wear a backpack everywhere. It’s really not a big deal except when someone doesn’t realize that it is part of my personal space and starts pushing on my back pack or grabbing at it despite the hangtag stating it contains medical equipment.” — Christiana W.
13. “Sometimes getting up to cry and/throw up in the middle of the night silently because you don’t want to disturb others.” — Roxanne M.
14. “Sitting down on the floor in a public place that has no seating because you’re a bit dizzy from nausea, pain, or hunger.” — Roxanne M.
15. “Taking too long in the bathroom at a restaurant after a meal and strangers thinking you’re either bulimic or it’s morning sickness.” — Roxanne M.
16. “The fact I avoid any liquid that’s too dark in color to avoid any confusion so I can easily tell if I’m bringing up blood from a stomach tear again or if it’s a Pepsi.” — Roxanne M.
17. “Most of my day is centered on trying to get enough to eat and drink to make my body work barely enough to function. Even though I can’t eat anything I actually want to. It takes a lot out of me to do the little things. Its hard when others have unrealistic expectations of you because your illness is mostly invisible.” — Kaity H.
18. “Sometimes I have to go almost an entire day without food just so I am sure my daughter and I can go out and do the fun things we planned. Eating breakfast usually means my entire day will ruined.” — Amanda R.
19. “Eating just to fit in even though you know you are going to lose it a few hours later but you just want to feel normal.” — Lori G.
20. “Becoming more withdrawn. Sometimes it’s too hard to explain why you can’t eat certain things or are not up for anything some days.” – Stephanie D.
21. “My 9-year-old daughter said, ‘It hurts to eat. I don’t want to eat but I do it anyways because it just tastes so good.’ She misses a lot of school and extracurricular activities.” — Mary W.
22. “My naps are a necessity, not a luxury.” — Amy M.
23. “I can’t control my body temperature. I go from freezing one second to sweating the next.” — Denean A.
24. “About 98 percent of the time, if I turn down an invitation to go somewhere, it’s because of my stomach.” — Lisa W.
25. “Always having a nutritional supplement drink and peppermints or ginger candy in my bag.” — Desiree M.