What People Should Know About Gastroparesis Before Commenting on My Weight


Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

Contrary to popular belief, sometimes losing weight is not a good thing. Sometimes it’s the opposite of your goal and every time you step on the scale and you weigh less, or your leggings sag in the butt it’s actually quiet devastating.

Before gastroparesis, I was very fit and athletically strong. I actually didn’t realize at the time how good of a condition my body was in, until it started to fail me. I was going to school, working, held up a social life all while still going to the gym, lifting pretty heavy. That all exhausted me, but it was a very wild and free part of my life so I didn’t care.

Fast forward to gastroparesis and my body was the opposite. I could not work, could not go to school, could not work out, and had no social life. When I was undiagnosed, throwing up all day long multiple times a day, keeping absolutely nothing down, my weight dropped to a very scary place. My family and fiancé were absolutely terrified. I didn’t really fully see it until I was TPN and gained weight back. At one point I was actually starving to death. No, I’m not saying that out of extreme hunger — I mean it. I was admitted for low labs and started TPN which saved my life.

Since losing all the weight and gaining it back, it has been a little weird because I’ve seen my body in so many conditions. I’ve seen it at its peak, and at its weakest and malnourished. I lost all my confidence because I felt like I lost all my curves. My body got so weak I could not stand for a full shower, going grocery shopping and walking around a store was a struggle, I was so fatigued. I even passed out due to lack of nutrition.

 

So you would think after giving nurses and doctors all your extensive history they’d have compassion and empathy, but some of the most ignorant comments have come from them.

“I wish I could get sick just to only lose weight!” No, you don’t. I promise puking every day is not glamorous.

“Well, at least you get to be skinny!” Actually my body was stronger, and more me before.

“You weigh less than you guessed, and less is always better!” Did you not hear me say I was malnourished before and have been struggling with maintaining weight lately? Did I not say my nutrition needs to get better? And did you not hear me say “aww man” with a bummed look after I saw I lost weight?

We live in a world that is fueled by the idea that being skinny means being happy, but that’s not the case. Things didn’t go quite as I hoped when I got off TPN. And people seem to be under the impression that because I am no longer on TPN I am better, which as much as I wish that was true… it’s not. I was so much more fit on TPN. An abdominal hernia/surgery, an extremely bad flareup in my shoulder I’ve had a couple surgeries on so I need physical therapy, and lately struggling with maintaining weight because of gastroparesis has really messed me up.

I know this is just going to be a lifelong struggle I will face (unless a cure comes out!). But I’m not down for the count, I will get back to where I want to be!

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

Thinkstock photo by finwal

TOPICS
JOIN THE CONVERSATION

Related to Gastroparesis

jim gaffigan using a syringe to inject his wife's feeding tube

How Jim Gaffigan Helped Change the Way I See My Feeding Tube

This morning, just like every morning, I got up, went to crush my meds and put them through my feeding tube, and had Facebook open on my phone on the counter as I was doing so. One of my favorite comedians, Jim Gaffigan, posted a video that I wanted to watch. I hit play, and [...]
Lightbulbs hanging from ceiling, one lit up.

Chronic Illness — Is Knowledge Enough?

Knowledge is not the same as understanding. Knowledge is a mere accumulation of facts and data, while understanding requires a bit more. It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden. I am convinced there is a basic lack of understanding regarding the [...]
Sitting on ground, with bowl of good in a bowl.

Why I Don't Want You to Experience a Meal Like a Gastroparesis Patient

Gastroparesis is a functional motility disorder that impacts the upper digestive tract, primarily the stomach, and causes a wide range of symptoms. It’s a disorder that can be caused by different factors, or be completely idiopathic. It’s a disease that leaves some people nauseous after a small snack, and prevents others from eating by mouth [...]
nurse smiling with stethoscope around her neck

Celebrating National Nurses Week as a Chronically Ill Nurse

January 21, 2016 at 7:30 a.m. 16 months ago, I stood at the bedside of my critically ill patient and flushed his arterial line after checking for a blood return. I reinflated the pressurized bag of saline, checked the output from his wound drains and chest tubes and dopplered his legs to listen for his weak [...]