Posted by Julia Matos on September 02, 2016
It is human nature to want to learn and question the world around us. It is natural for us to seek innovation, invent new things and express new theories. This is how we improve and how we have achieved the advances we have today. Nothing is wrong with this innate desire to learn and be curious, except when you’re the one that’s being questioned and or are the object of someone’s curiosity.
Until recently, I’ve never thought of what it would feel like to be under the microscope of society’s judgment. After all, I was just a “normal” teenager residing in a “normal” city, living a “normal” life. I was attending college, spending time with my friends, and trying to keep up with the ever changing social trends. However, a Crohn’s diagnosis can really change this so-called “normal” lifestyle, especially when it is paired with a seven week hospital stay, two major surgeries, TPN, a PICC line, multiple JP drains and a much more all within a six month time period.
Now that I’m out of the hospital, most people would probably never know that I’ve been so sick if it weren't for the continued use of TPN, a PICC line protruding from my chest, a drain sticking out from my abdomen and two different medication patches on my arms. All these things “give me away” to our curious society, making me feel vulnerable as for my unusual medical additions make me a target for peoples’ curiosity. And what do people do when they see something unusual or that they’re curious about? They stare.
They stare and point and question. If it weren’t for these moments when I catch someone’s sideways glance or double-take I wouldn’t even think twice about the devices that are attached to my body, helping me fight this disease.
For those out there who feel the need to stare, my suggestion is simply to ask about the tubes, patches and drains that are connected to my body. I can only speak for myself, but I know that most people who also rely on external medical devices appreciate those who are brave enough to ask questions rather than pretending to ignore the obvious. Knowing that someone is genuinely interested is far less offensive than a look of pity.
So thoughtfully ask away and I will tell you how the bag and tube connected to my PICC line pumps 1800 calories of nutrition directly into my veins because my small intestine can’t absorb any nutrients. I will explain that the plastic bulb you spot in my pocket is draining the fluid from my intestines that would otherwise be leaking into my abdomen. I will disclose that the nine inch scar on my abdomen is from a nine hour failed surgery to remove a part of my intestines; a surgery that I barely survived and that I will have all over again because I need to.
Dealing with a chronic illness is not something most of society has to overcome, so I enjoy educating those who are willing to listen. Knowledge is power, whether that be helping an individual relate better to a sick loved one or helping them approach someone with a chronic illness in the future.
So next time you see something a little unusual that you might be curious about, ask, don't stare, you might be surprised what you learn. Everyone has their own battle to fight, just for some it is a little more obvious than others. Ask and I’ll tell you that my additions make me proud, they show me how far I’ve come, and they make me who I am today.
It's great being part of the PAC because they don't judge or question people's medical additions! It's somewhere I feel "normal”. But I want people to know that despite my tubes, I can still do almost anything I could do without them. I think people may see me as being restricted or different because of them, or at least that’s what their looks say. I don’t want that to be the stigma of it. Here I am doing something I love to do - playing miniature golf:
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