For many of us who are chronically ill, we come to learn people will always stare. And trust me, they do that a lot. I don't think they mean to do it on purpose; it's just human nature. But it always turns out to be really annoying for those of us who are sick.
It makes you question whether the person is trying to be mean or if they are just curious. I often find most people are just curious. They see something different and they automatically have to know more. Sadly, more often than not these people are actually afraid to ask. They don't want to be mean to the person they are staring at but to us, the ones being stared at, it is meaner to not ask at all. Being the person I am, I tend to raise awareness and educate those about my disease. I'm a pretty positive person. If you have ever read my blog before or even just know me as a person you'd know that statement is pretty accurate.
Obviously, if I go to the beach or the pool and wear a bikini people will stare. Heck, people stare even when they see lines sticking out of my shirt or my feeding tube pump beeping! I mean, trust me, I have noticed it causes quite the disturbance at the mall, school or even church. I don't mind the stares at all. You learn to overlook them and just mind your own business. It is just my life -- not theirs. I know what I am doing and if they really cared they would ask me themselves. Some people actually do and I basically just explain that my stomach is broken and I just can't eat like you. So these tubes help me eat.
Yes, I have gotten some very rude people and those who are just idiots. Apparently, my tube is just a pair of "headphones?" YES, I really got that question! They help me hear my stomach juices... (SARCASM). Well, you actually CAN plug headphones into your feeding tube. Yes, I have tried!
People always tell me they are embarrassed about showing their tube. Personally, I don't find it to be a big deal, but I know many are scared of being judged by others because they have one. They don't want to draw attention to themselves or they just don't like the feeling of knowing they need tubes to keep them alive and they don't want people to know about it. My personal motto is never be ashamed of something that keeps you alive! That's what I've stuck with. My tubes are my lifeline and without them I would literally drop dead. I have been very open about my disease if people ask me about it. No, I am not going to publicize that I am sick, but if you ask that's up to you. There are many friends of mine who don't even know I am sick or have never even realized that I am connected to tubes, which is weird because it's quite obvious!
Those of us who are sick sometimes feel uncomfortable about answering questions from strangers about our illnesses. We should remember that those who are asking feel just as uncomfortable about their questions because they aren't sure about our response. My advice: Just keep it simple. They usually won't try to go too in depth, they just want to know the basics. Not everyone has the brain of a doctor or nurse! The general "it's just a feeding tube because I have so-and-so disease" is enough. Little kids really don't care. I have noticed they stare less than adults! They just take one look and basically ignore it or they ask what it is and you say, "it's a feeding tube because I can't eat like you" and they are totally fine with it. On the other hand, many adults are sadly disgusted by the fact that I even have a tube. It must suck to have a twisted mind that is appalled by anything different. I think I could probably teach them a thing or two about acceptance.
Anyway, I 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?) What I am saying to those who are ashamed of what their disease has done to their body: never be ashamed of something that keeps you alive. That's just the way God made you and if that is fine with him then it better be okay with everybody else. Also to those who are the ones who stare and ask questions: just be respectful about it. Most of us don't care if you ask questions because all that means is that you want to know more about our struggle and hey getting a quick science/medical lesson never hurt anybody!
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