5 Things I Wish People Understood About Living With Gastroparesis

I want to increase awareness for gastroparesis and digestive tract paralysis (DTP) so there can be more understanding and less stigma about what it’s like from our perspective — the people afflicted with these conditions. We need more funding and research for better treatments, and maybe even a cure someday.

This is what I wish people understood about living with gastroparesis:

1. It’s not a choice.

Gastroparesis is not something anyone chooses. It’s not our “fault” for having this condition. It’s not a psychological disorder or an eating disorder. It’s not something we could have changed by “trying harder” or “eating anyway.”

2. We are not lazy.

Just because we may not be employed doesn’t mean we don’t work. We work permanent, endless hours for a boss that shows no mercy for birthdays, holidays or overtime. Dealing with chronic pain, chronic nausea, medication side effects, hooking up to IVs and/or feeding tubes, going in for doctor’s appointments, ER visits, hospitilizations and being our own advocates are jobs that never end.

3. We don’t want to be treated like we’re “damaged.”

We accept that we’re different and have limitations, and we appreciate people’s empathy, but that doesn’t mean  we don’t want to be thought of or included. Too often people tend to consciously or unconsciously write us off, treating us like we’re “too complicated” to get involved with or not really worth getting to know beyond a diagnosis.

4. Please try not to resent us, even though you may resent the illness.

It’s normal to feel resentful of an illness that is taking your loved one away from you, but it’s easy for that resentment to spill over. We know it’s difficult, but try to understand we’re doing the best we can with what we have.

5. The pain is real.

We’re not exaggerating when we tell you we have pain. If anything, we might be under- exaggerating it. Just because we may not appear to be in a lot of pain or look disabled on the surface doesn’t mean we’re not. We put a lot of effort into trying to look “good” and often tell you we’re doing “OK,” but what’s going on inside is very different.

I hope this will help more people understand what it’s like from our perspective, and I hope it makes those who do live with gastroparesis and/or digestive tract paralysis feel like they’re not alone. Thank you for reading.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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