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5 Things You Shouldn't Say to People With Gastroparesis

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My father died August 23, 2016. Shortly after his passing, I was diagnosed with gastroparesis. My diagnosis was a struggle, a long hard fight with my doctor, family and friends. For seven months I was constantly told:

“Eat a hamburger.”

“It’s just grief.”

“It’s anorexia.”

“It’s depression.”

It wasn’t until I got fed up seeing my primary care doctor every six weeks, eating into my deductible, just to step on the scale and see I’ve, yet again, lost more weight, that I demanded to see a gastroenterologist. Once I did, I was finally diagnosed with gastroparesis (GP). It was a day of mixed emotions and complete vindication that I wasn’t anorexic and it wasn’t “all in my head.” But there was also the stark fear of what this would mean for my future.

People who have this condition know how hard it is to explain what exactly gastroparesis is. Hell, at times, we’re confused about it ourselves! We know those people the closest to us mean well when they give advice. We know they truly care and are concerned. This article is not for those people. This article is for those acquaintances – distant family members or friends we see maybe once a year.

If your family is like mine, word spreads quickly, “So and so has this, and has lost weight. Don’t mention it to her when you see her.” And, no matter how many times it’s been said, there’s that one person who has to be a thorn in our side. It’s inevitably a non-family member, but close enough to be family, that we have to bite our tongue.

For you distant relatives and friends who may see us once or twice a year, here’s a list on how to not handle any conversation with a person with gastroparesis while at a restaurant, or just when eating in general.

1. Do not comment about what’s on my plate or make suggestions on what I should eat.

Sure, while at a Mexican restaurant I want to chow down on the beefiest, beaniest, cheesiest burrito out there. Hell yes, I want the whole bowl of salad from Olive Garden, but I don’t want to be sick the rest of the day or have my stomach rebel.

Stop telling us to, “Eat more rice,” “Eat more beans,” or even what’s worse, “Have a glass of wine!” Rice, beans, nuts and alcohol are big no-no’s for a person with GP. Telling us to eat those things just shows your ignorance and unwillingness to learn about the subject.

2. My condition is not, and never will be, dinner table talk.

Do you really want to hear about how I wasn’t able to get off the toilet for 20 minutes? Do you really want to know that I haven’t pooped in three days and I feel like I have stones in my stomach? Do you want to hear about my dry heaves? Or the severe nausea I feel when I move? This is not dinner talk! Do not ask me in detail how I’m feeling at the dinner table unless you want a play-by-play of my daily bathroom habits.

3. If I’m brave enough to eat out in public, don’t make me regret it.

I try not to eat in public since I’m so limited on what I can eat, and I also am aware that people will look at what I order and judge. If I’m brave enough to eat out with family and friends, don’t make me regret it by piling question after question on me. If you’re asking me very loudly about my condition and other people around can hear you verbatim over regular restaurant noise, you may want to tone it down. Don’t make “compliments” on how great my nails and hair look despite being so “skinny and unhealthy.” When I go out, I make it a point to try and look my best. But at the same time, I don’t want unwanted attention on me because you feel the need to talk loudly.

4. Do not skinny shame me.

And, yes, there is a thing such as skinny shaming. When a person goes loses weight, it is not OK to say “Well, you’ll be that size forever!” That’s not what I’m thinking when I get dressed in the morning. I don’t look in the mirror and see a number, I see an unhealthy girl who wishes she was back at her healthy weight and able to run six and a half miles again. I miss that healthy girl. I miss seeing a healthy body in the mirror. I miss running. I miss weights. I miss that push I gave myself to conquer my running miles.

5. I am well aware what happens if I lose more weight.

I don’t need to be told my heart will fail on me if I lose more weight. Don’t you think I already know that? Don’t you think I’ve had scares? Don’t you think that’s what’s on my mind every single day? I worry constantly that if I lose more weight my body will fail. I wake up every morning and hope that I have the energy to get through the day. Your words are not encouragement. They. Are. Hurtful.

My bottom line is this, most people don’t know the first thing about gastroparesis. I usually get that “deer in the headlights” look when I tell people what I have. But, know this: I have done more research on my condition than you or anyone else has. I will be happy to explain my condition, what it is, what it means, etc. However, I cannot and will not listen to unsolicited advice, and I will not allow someone to make me feel bad about my body. Gastroparesis already does that for me.

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Originally published: November 22, 2017
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