I had forgotten what it was like to have people stare at me everywhere I go, since it has been almost a year since I had stopped using an NG tube.
With my gastroparesis getting harder to handle and not getting the nutrition I need, my doctors decided a few weeks ago we needed to do a NJ to bypass the stomach and start up feeds again to help regain weight and nutrition to help since I was malnourished and tachycardic.
It is always an adjustment getting used to having a tube in your face. Change has never really been my forte so every time it’s really hard but I try to not let that show too much. It feels an awful lot like constantly having a stuffy nose, or something constantly stuck in the back of your throat. It gags you constantly, which you just adjust to over time. All of that is still more tolerable sometimes than the stares children will give you out in public places.
I will never forget the first comment I heard a child say while I was cheating on the whole “No food” thing and buying pretzels almost 2 years ago, he tugged at his mom’s sweater and looked at me and then back to his mom and said, “What’s that snake in that girls face?” I’m sure he probably realized it wasn’t a real snake but just didn’t know the word for tube, who knows.
All I knew was I felt incredibly awkward all of a sudden. I was conflicted. Should I speak up? Should I explain to them what it is? Should I just look away and pretend I didn’t hear it? I didn’t have enough time to fully react because the mother had already hushed her son and pulled him to the other side of her away from me. I’m sure she didn’t mean anything rude by it, most people rarely do, but when the stares become an every day thing and people lose their barriers or filters and decide it’s okay to ask a stranger, “What the heck is that on your face?” It gets a bit old… at least anymore it does.
I don’t really know how to feel about it all, which isn’t uncommon for me, identifying feelings is currently what I’m learning in therapy, but on top of knowing how I feel, I’m not sure how to convey verbally to people how I feel. Especially in regards to the questions and comments. On one hand, regardless of how the question is asked, I want to answer and inform them to help spread awareness, but the bitter person in me wants to tell them, “Can you not?” or “Bite me.”
Obviously though, getting upset doesn’t really do any good. So I’ve started thinking I’m gonna make a T-shirt that says, “It’s a feeding tube, not a snake.” That way I don’t have to answer the question anymore, plus a T-shirt is a lot cheeper than getting it tattooed to my forehead.
All I can really do is talk about it, and break the shushed silence or answer the unyielding questions that I do not owe people the answers to. Maybe if I educate someone now, when they encounter another person they will have more knowledge and be less ignorant. It’s the least I can do really.
For more information on feeding tubes and Gastroparesis: