15 Things People With Gastroparesis Wish They Knew When They Were First Diagnosed

The first few months or even years after getting a gastroparesis diagnosis can be scary and lonely. With limited (and sometimes incorrect) information available online and knowledgable doctors few and far between, it can feel like you’re all alone as you navigate the ups and downs of this chronic illness.

We teamed up with G-PACT to ask our Facebook communities: What do you wish you knew when you were first diagnosed with gastroparesis? For those who have just heard the word “gastroparesis,” we hope their words of wisdom will give you insight into the condition and confidence in your ability to manage your health.

Here’s what they said:

1. “Finding what you can and cannot eat and drink will take time and lots of trial and error. Be patient with your body; it’s doing the best it can right now. Take it one day at a time.”

2. “I lost friends, but it’s the ones who stayed and the ones I’ve made through being ill that matter!”

3. “You’ll have good days and you’ll have bad days. Don’t force yourself to do more than you can handle. Stick to your plan and listen to your body. It will tell you what you need to do.”

4. “Eating will become a full-time job, struggle, and sometimes impossible feat! My stomach hurts every minute of every day, and I actually bought a toothbrush just for the vast number of times throughout the week I end up vomiting.”

5. “There would be entire weeks where I wouldn’t want to eat anything at all, and that would be OK. Gatorade is my best friend.”

6. “Take advantage of every good moment. Cherish every memory. Don’t become a shut-in because that only makes things worse. There is healing in interacting with others, and no matter how sick you may be, there is still so much to live for and you can still do great things.”

7. “I wish I knew, even though I was a young adult, I wouldn’t be taken seriously and would need to bring my mom to my appointments to help advocate for me. I wish I knew I would end up knowing more about gastroparesis than most doctors I came in contact with.”

8. “I wish I knew I wasn’t alone. I had never heard of GP and my doctors knew very little about it either (so much bad information!), so it was as if I was diagnosed with a very rare condition. I had to go searching online to find others to realize I’m not alone, that what I’m going through isn’t rare, and that there is a lot more information out there so I can help myself as much as I can every time the doctors can’t/won’t.”

9. “I wish I knew my condition would wax and wane over the years. I wish I knew the spectrum of severity for gastroparesis is wide (from mild to very severe).”

10. “Each individual case is different. What makes one person sick may not necessarily make the next person with gastroparesis sick.”

11. “Once I was diagnosed I wish I had known more about nutrition because the doctors gave me no information on how to treat this. It took me years to help myself. Because of the lack of proper nutrition for years (malabsorption) I have permanent GI problems.”

12. “Keep good records, dates, and a food journal so you know what makes you sick and what doesn’t make you sick.”

13. “I wish I understood how important connecting with others would be — I spent months feeling isolated, scared… and it didn’t have to be that way. There’s power in numbers, and hearing from others made my feelings validated.”

14. “Just because our culture revolves around food doesn’t mean I can’t bring my own food/smoothie/soup with me to places or events or even suggest eating places that have these options. Being a recluse is my choice. And others understanding this condition rests upon me.”

15. “Sometimes you have to fight to live in ways you never dreamt of. Don’t give up.”