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18 Truths People Who Use Feeding Tubes Wish Others Understood

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People who use feeding tubes, or who help a loved one use a feeding tube, are used to the stares. They’re not eating “normally” and sometimes, that makes others uncomfortable. It’s time for that to change. The Mighty asked its Facebook audience to describe one thing they wish others understood about their or a loved one’s experience with a feeding tube. The responses were enlightening. Here’s what they had to say:

1. “It’s not a scary thing.” — Leanne Dye-Taylor

It's not a scary thing.

2. “Running into the nearest gas station for a snack isn’t really an option. It takes planning and preparation to be gone all day, let alone overnight trips.” — Colby Okenka

A small child using a feeding tube.

3. “Everyone has one for different reasons.” — Kate Sytsma

4. “We don’t have feeding tubes by choice. It’s a life thrust upon us due to illness. We’re not just ‘picky eaters!’” —  Chanel White

We're not just picky eaters.

5. “A feeding tube isn’t the end of your life. For me, and for many, it is only the beginning.” — Savannah Orth

6. “Everything has to be scheduled around feeds, seven days a week.” — Lavella Garner

A woman with a feeding tube.

7. “It is not convenient.” — Elizabeth Small

8. “We can’t start giving him ‘real’ food just because he’s technically old enough to eat it… We can’t just pat him on the back if he chokes and aspirates; getting even a small amount of fluid in his lungs can be fatal. It’s not a matter of him being lazy, stubborn or stupid. For him, this is life and death, and I’d much rather people talk to me about it than just assume he has it because it’s ‘easier’ to feed him that way than to take the time to try to make him eat a bottle or jar of baby food.” — Jessica Hirschenhofer

9. “There’s nothing gross or disgusting [about it].” — Paula Lathrop Kockler

A boy with a feeding tube.

10. “No, even if we give him ice cream, he will not eat.” — Bailey Delaney-Woodard

11. “My feeding tube saved my life, and if it’s going to keep me as healthy as possible, I’m happy to have it.” Joan Elizabeth

My feeding tube saved my life.

12. “It’s OK to touch!* It’s not fragile, nor is it going to fall out when tugged.” — Bailey Annan Sonday

13. “I’d rather people ask questions than just stare.” Mandy Joan

I'd rather people just ask questions than just stare.

14.”‘Doing better’ doesn’t mean we can get rid of our feeding tubes. We’re doing better because of our feeding tubes. Getting rid of it could undo all of that.” — Catherine Richardson

Woman with a feeding tube.

15. “Just because I can’t eat, doesn’t mean I don’t want to go out and socialize with my friends. I’m happy sitting in a restaurant just enjoying the company.” — Mel Halliday

Just because I can't eat, doesn't mean I don't want to go out and socialize with my friends.

16. “Please don’t feel guilty that you eat. I eat too, just in a different way.” — Tamie L Dimmick Harlan

17. “No, it never just comes out. [It’s] just another ‘thing’ that you get used to. “– Jennifer Geister Ward

A little girl with a feeding tube.

18. “My feeding tube doesn’t mean I’m dying. In fact, it’s actually what has allowed me to keep living!” — Kristi Roach

My feeding tube doesn't mean I'm dying.

*Please never touch someone’s feeding tube without asking their permission.

**Some responses have been shortened and edited.

Originally published: July 6, 2015
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