10 Things People Should Know About Gastroparesis
I was diagnosed with gastroparesis seven years ago. I’ve documented my challenges with this chronic illness on my blog, and I’ve talked extensively about my personal journey with delayed stomach emptying.
However, many people have no idea what gastroparesis is or how it affects those who live with it. Because of this, I felt compelled to write about some things people should know about gastroparesis. I hope this raises awareness and sheds some light on what it’s like to live with dysmotility.
1. Gastroparesis is a chronic illness.
Unfortunately, gastroparesis doesn’t have a cure. It’s a chronic condition. I hope my health will improve one day, but I’m 99 percent certain I’ll be dealing with symptoms for the rest of my life.
I was diagnosed seven years ago, and my flares have only worsened over time. Fortunately, flares ebb and flow, so I do experience periods of time when my symptoms are mild. Even still, gastroparesis is unpredictable. I never know when the next flare will hit and how bad it will be.
2. Just because I don’t look sick doesn’t mean I’m healthy or cured.
Gastroparesis is an invisible illness. You can’t tell I’m sick just by looking at me. I don’t use a wheelchair or a cane. I don’t have a feeding tube (although many with gastroparesis do, but they’re not always visible), and I don’t require assistive equipment. Besides my low weight, I look healthy.
However, this doesn’t mean I’m not sick. I experience constant nausea, bloating, abdominal pain, fatigue, brain fog, weakness, dehydration and malnourishment. Even when I dress up and wear makeup and smile and laugh, I’m still experiencing these symptoms. Gastroparesis is often invisible, but it’s always there.
3. It’s not a choice.
I didn’t choose to have gastroparesis. I don’t choose to skip meals and experience nausea around the clock. I don’t choose to be this thin and malnourished. I want, more than anything, to enjoy food like a normal human being and to gain weight.
However, my body doesn’t allow me to do this. My stomach is paralyzed. Food doesn’t digest like it should. I’m constantly nauseous, bloated and sick to my stomach. My body rebels against every bite I take and every bit of food I swallow. Who would willingly choose that kind of life?
4. My “normal” is very different than a healthy person’s “normal.”
When I tell people I’m stable, I’m usually met with thrilled exclamations of joy (and it’s definitely something to celebrate!) But it’s also typical for people to think I’m completely healthy again or cured. The reality is, when I’m stable, that just means I’m not losing weight, in danger of being hospitalized or experiencing severe symptoms.
But even if my symptoms aren’t severe, they’re always present. I might be able to get out of the house more often, go shopping, do light exercise, travel and be more social, but I still can’t eat normally, I still feel tired all the time and I’m still severely underweight. My “normal” is not a healthy person’s “normal.” It’s important for people to understand the difference.
5. I hate that I’m unreliable and cancel plans often.
If I’ve ever canceled our plans at the last minute, I can guarantee you I felt guilty about it for the rest of the day, maybe even the rest of the week. I hate letting people down. I know how frustrating it is when someone cancels last minute, so I try not to do it often. But sometimes, I can’t help it. It’s not that I don’t want to hang out with you. It’s not that I’m lazy. It’s not that I don’t value our friendship. It’s literally that I’m experiencing so much pain, nausea and fatigue that I can’t leave the house.
6. Social situations that revolve around food can be awkward for me.
You know what makes those situations even more uncomfortable? When people ask, “Why aren’t you eating anything?” I can’t tell you how many times I’ve ordered a baked potato or a side of scrambled eggs, and someone has said, “That’s all you’re going to eat?”
Social situations that revolve around food don’t have to be awkward. I’m perfectly happy participating in the conversation, drinking some tea and hanging out. It doesn’t bother me that I can’t eat, and I enjoy watching other people indulge in things I can’t. But when people start drawing attention to the fact that I’m not eating or how little I’m eating — and not in a curious, genuine “I’d like to know more about gastroparesis” way, but in a rude, insensitive way — that’s when I get uncomfortable.
7. No, your shakes aren’t going to cure me. Neither will becoming vegan, cutting out gluten, taking a specific vitamin or seeing a chiropractor.
I appreciate it when people are eager to help, I really do. But I can assure you, I’ve done extensive research into my condition, and I’ve tried just about everything — medical and holistic — to try to ease my symptoms. There is no cure. And the medications or treatments that can help ease my symptoms? There’s a 99 percent chance I’m already taking/doing them or have tried them. People usually have good intentions, but the truth is there’s no magical cure for gastroparesis.
8. Even on my good days, I have to use my spoons wisely.
Have you heard of the Spoon Theory? Basically, it’s a disability metaphor used to explain the reduced amount of energy available for daily activities and tasks that result from disability or chronic illness. Spoons are a unit of measurement used to track how much energy a person has throughout the day. Most healthy people have an unlimited number of spoons each day and unlimited energy to do whatever they desire.
People with a disability or chronic illness, however, have a limited number of spoons, and they need to use them wisely. Every single daily activity and task requires a spoon. Some days, I have 15 spoons, and I feel like I’m on top of the world. But other days, I only have five spoons, and it’s impossible to complete everything that needs to get done.
9. Heartfelt texts and phone calls mean the world to me.
Having a chronic illness can be so isolating, especially if I’m going through a bad flare, and I’m stuck in my house for days on end. I know people are busy and have their own lives to tend to, but a simple text or phone call to check in can change my entire day for the better. It’s such a nice feeling to know that friends and family care, even when they’re not physically present.
10. I have a deep appreciation for life that I didn’t have before getting sick.
I don’t feel lucky I have gastroparesis, but I do feel lucky I’ve experienced something that’s helped me understand how fragile, uncertain and beautiful life is. Before I got sick, I took certain luxuries, like eating meals, exercising, staying out late and traveling, for granted. Now, I appreciate every single moment I’m given. Having a small bite of something delicious, stepping off an airplane, going grocery shopping and taking a walk all bring tears to my eyes because I know what it feels like to be too sick to do any of those things. And for that, I’ll be forever grateful.
Follow this journey on Shelby Travels.
Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.