"May I ask what those are for?", they say pointing to my feeding tube and central line tubes. Alright, no big deal, I have no problem with talking about this. I have no problem explaining my disease and what I need to keep me alive. "Um... I can't eat... so... this is how I get nutrition," and this wonderfully awkward sentence sometimes ends with some inaudible mumbling that doesn't completely answer their question and then the conversation goes on normally. I have no problem explaining my condition, but why is it when someone pops the question, "What are those for?" in the middle of a conversation, I just can't seem to give a short and informative answer? I can beautifully explain it if of bring it up or in a PowerPoint, in a blog post or email, but I can't quite do it on the spot. So to everyone who has not been given an answer, here is what I want you to know.
1. I have a genetic connective tissue disease called Ehlers Danlos Syndrome.
EDS affects the collagen (basically the glue that holds all of your organs, joints, and blood vessels together) so my whole body is affected. From dislocating joints on a daily basis to organ dysfunction, I have a whole array of ever changing symptoms. My genes are to blame for this rare disorder and is highly misunderstood by doctors.
2. Because of EDS, my GI tract doesn’t work as it should.
EDS causes Dysautonomia, which is dysfunction of the autonomic nervous system. Dysautonomia causes dysmotility, the muscles in my GI tract don’t push food along. EDS also causes an abnormal buildup of collagen around my intestines, which affects how my GI tract works.
3.This means I can’t “eat.”
Non- functioning GI tract=no food for me. I’m constantly nauseous and bloated because everything just sits in my stomach, which puts eating and drinking out of the question. So I get my nutrition by way of feeding tubes that go into my stomach and intestines, which I use to feed, get meds, and drain, and a central line, which is a tube in my chest that goes into a vein next to my heart, to give me fluids, vitamins, and nutrition.
4. I have a lot of pain and fatigue, and strange symptoms that can change by the minute.
One minute I may be laughing and walking around, and the next I may be on the floor with vision disturbances and trouble breathing. I can’t do much about most of these symptoms, and when they happen, I have to ride it out. Asking if I need anything means a lot, and even if I don’t, knowing someone is there for me makes all the difference.
My faulty collagen and I will live out our days together here on earth, and kind of like an old married couple, we get a little tired of each other. So your good intended “Get well soon”, or “Feel better”, may feel like a punch in the stomach. Acceptance is a big part of having a chronic illness, which means saying, “I could never do that”, or “Wow, I would be so depressed if I had to live like that”, is not a compliment of my strength, it’s a sugarcoated version of, “Hey great job, your life is way worse than mine, so let me think about how bad you have it so I can feel bad for you and make myself feel better!”
6. This doesn't mean you have to treat me differently!Just because I am a little different than you, doesn’t mean I’m not a person too. And please, don’t hesitate to ask me anything, keeping things open and light is always better that staring and wondering. I like to hang out on the weekends, I like to go out with friends, if you ask and I am having a good day, chances are i’ll say yes. Accepting each others differences is part of life, sometimes it may be a matter of which sports team a friend likes, or maybe it could be that your friend has an incurable disease. Either way, a person's a person, no matter their differences.