What I Do When People Stare at My Feeding Tube

For many of us living with a chronic illness, you learn quickly that people stare. And trust me — they stare a lot. They stare at the mall, at school and at church. They stare when I’m wearing a bikini at the beach or at the pool. Heck, people even stare at the lines sticking out of my shirt or when my feeding tube pump beeps.

I don’t mind the stares at all, but sometimes it’s hard to tell if someone’s being mean or if they’re just curious. While I find most people are just curious, that doesn’t make it any less annoying. Even though they’re curious, they’re still afraid to ask.

And if they really cared, they’d ask.

Of course I’ve dealt with some rude people, or people who don’t understand. Once someone asked if my tube was a pair of headphones. Yes, that actually happened. They help me hear my stomach juices, obviously. (You can actually plug headphones into your feeding tube, I’ve tried.)

I’ve also noticed that kids stare less than adults. Kids take one look, ignore it or ask about it, and then move on. Many adults, on the other hand, look sad or disgusted. I could probably teach those people a thing or two about acceptance — it’s so twisted they’re appalled by anything different.

Other people in my situation tell me they’re embarrassed to show their tubes. They’re scared they’ll be judged and don’t want to draw attention to themselves. They don’t want people to know that tubes keep them alive. My personal motto: Never be ashamed of something keeping you alive! That’s what I’ve stuck with, and it helps me talk openly about my illness.

Being the person I am, I love raising awareness about my disease. While I don’t want to publicize that I’m sick, when people ask, I tell them. My advice is to keep it simple. They usually just want to know the basics — not everyone has the brain of a doctor or a nurse. I explain that because my stomach is broken, I can’t eat like everyone else. The tubes help me eat. Also, while it’s hard for those of us who are sick to talk about our illnesses, we have to remember that other people probably feel as uncomfortable as we do.

Never be ashamed of something keeping you alive. I believe that’s the way God made you, and if it’s fine with Him, then it better be OK with everybody else. I always say: Let people stare, I don’t care! It’s my life, not theirs, and they can row a boat and get over it. (Isn’t that the saying?) If you want to ask questions, just be respectful. Most of us don’t care because it means you want to know more.

And a little medical lesson never hurt anybody.

A version of this post originally appeared on It’s Not as Easy as You Think.  

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