talkhealth Blog

Everyday I am Fighting on the Inside BUT Fierce on the Outside.  I refuse to give up and I refuse to give in to my disease.  My life with Crohns makes each day an uphill battle, BUT it has also made me a fierce fighter.

This week is IBD Awareness Week and my goal throughout this week is to bring awareness to the disease by demonstrating that although inside me a battle is being fought, on the outside, I look just like everyone else.  I have often heard IBDers talk about the insensitive or sometimes flat out rude things people have said, just because we do not look sick.  I believe that if I can raise awareness for this disease, while demonstrating the severity of my disease, and simultaneously looking ‘normal,’ that people will begin to see just how deceiving looks can be!

Meet Paul.  Now say it in a British accent, it sounds more like P-ole…yeah, I know, not really that funny, but when you have an IV pole in your dorm room, you have to find humor where you can.  I spent 12 hours every night hooked up to a bag of IV nutrition.  It gives a whole new meaning to the term ‘hooking up’…Not gonna lie, this guy puts a major damper on my social life!  The IV nutrition is called TPN (total parenteral nutrition).  Yes it looks like milk, and no it does not taste like ice-cream…it going straight into my veins, my superior vena cava to be exact. See, I look so super normal, BUT doing IV nutrition every night is anything but normal. 

One more thing, did I mention I can’t eat? No that was not a typo.  The point of doing IV nutrition is so I can rest my bowels.  Since my body obviously doesn’t like itself, hence the auto immune disease, it really doesn’t like food either.   I love food BUT it tends to hate me, so right now, I am on complete bowel rest, but if I’m being honest, I sneak bits here and there, and I have no shame about it!  

Just a tid bit of information, the whole freakin world revolves around food! No joke, there is food at everything and everywhere, it is ridiculous and mildly frustrating!  But I digress…How many people do you know that can survive without food!?  Point and Case, I’m still not normal!

If you still think my life is normal, you are officially crazy!  My life is not normal, nor is it easy.  In fact, my life is kind of rough, and sometimes it doesn’t feel like I’ll make it through in one piece, but I always do (mostly in one piece). 

Between numerous hospital visits, 4 surgeries, like 8 picc lines, 1 port, 1 ileostomy, and more drugs than anyone should ever have to take, I try to live a normal life.  I still go to school, I participate in my sorority to the best of my ability and on the weekends, I still try to go out.  

I try very hard to do everything, but in all honesty, I can’t do it all.  There are limitations and there are days when getting out of bed is nearly impossible.  I know I’m not the only IBD patient who feels this way.  But when I reach a day when I can’t make it to something or reach my limit, and I have to admit I am beat, the worst thing in the world is when someone responds with, “well you were able to do x last night, so you should be able to do this.” It is a crushing feeling to hear those words and although I don’t cry often, when someone says those words, I almost always cry tears of frustration.  

Because it is impossible to explain having a chronic disease to someone.  How each day is so different and how I grasp normalcy every chance I can get.  My suggestion, is if something doesn’t add up for you, ask, don’t assume you know the answer, because chances are, you don’t know the whole story.  And please don’t hold my attempt or any other chronically ill persons attempt at being normal against them.

This week I challenge you to share this post and continue to educate yourself about IBD.  The more educated you become about chronic illnesses, the better friend you can be to those around you suffering.  And always remember, that things aren’t always what they seem and even though I look ‘normal’ I live a very not so normal life!