To the Waiter Who Made Me Feel Ashamed of My Feeding Tube

More than a year ago, I had a permanent feeding tube placed into my stomach and intestines. I rely on it to give me nutrition that everybody else gets from eating food. The only difference is my nutrition is a special kind of formula, instead of fruits and veggies and anything else you eat by mouth.

My stomach is paralyzed and unable to digest regular food, unlike most other people. However, just like everybody else, I still need nutrition in order to live. I still need protein, vitamins and minerals. My food is just given to me in a different way. I am hooked up to my feeds 24 hours a day, except for the times I need to unhook it to push my medicines through. When I’m out of the house, you’ll see a backpack on my wheelchair, which contains my feeding pump.

Elle Barnes.2-001

I’ve never looked at somebody in disgust while they’re eating food because I know that’s how they get their nutrition. I sort of expected it would be the same for me. There are certain times I have to turn my feeds off for a few seconds to put some medicine through with a small syringe. It’s discrete. I try to time it so it doesn’t happen in public.

But this time, I just happened to be at a restaurant. I thought I’d go to the bathroom to take my medicine, but the door was locked. So I did it right at the table where I was sitting. The people I was with knew it was part of my normal routine and carried on with our conversations. There was no mess, no huge ordeal and everything went smoothly. I looked around at the other tables and nobody seemed to notice…or so I thought.

A few minutes later, a waiter (who wasn’t our waiter) came over and asked if I could either go outside or go to the bathroom the next time I needed to put medicine in my tube because there were several complaints about how gross it was, and some people couldn’t even finish their meals. He then proceeded to ask me why would I go to a restaurant if I couldn’t eat.

Before I could even reply, he walked away. I looked around and noticed everybody was looking at me and suddenly felt a huge amount of guilt. I had just put the people I love in a difficult situation. I told myself the waiter must have been right. Why would I bother going to a restaurant if I couldn’t eat any of their food?

But at the same time, the waiter didn’t realize how hurtful his words were. I became so ashamed of my body and my feeding tube. I knew the feeding tube was there to help maintain my nutrition and keep me alive, but it also made me different from other people. Many strangers out in public would stare at the cord hanging out of my shirt and do a double take. I could hear the whispers and was aware of all the stares.

But then I decided, who cares? I’m going to embrace it. So what if there’s a big tube hanging out of my stomach and intestines, and I don’t mind if someone looks over when I’m discretely pushing medications through the tube while being clean. We all have something unique about us whether it’s visible or not. My feeding tube was the thing I needed to get nutrition, medications and fluids, so why should I be ashamed of something I needed to keep me alive? There’s no reason.

I’m no longer ashamed. I don’t even notice the stares anymore. I hope the waiter never personally has to experience a similar situation one day or watch someone he loves go through it. So thank you, waiter. You made me realize I shouldn’t be ashamed of something that I need in order for me to thrive.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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