Invisibility is a Cloak
Invisibility is the cloak of disguise. Crohn's disease is my invisibility cloak, enshrouding me with pain unseen by others. On the outside I look normal, I can blend into society around me, it's my super power. But inside, something much larger than myself is raging on, and I can fall victim to it at any time. Other times, I decide to push past and live on like normal. And if I am really lucky, I get to live life without pushing through, but can actually feel WELL.
Someone from the outside of the chronic illness world still never truly gets how powerful this invisibility can be. I have one grand story of it though. One time where you can really see just how invisible this can all be.
I remember I was drenched in sweat and was in the most pain I had been in in a long time. Blinding pain, but all I could focus on was how it was the worst time for this to being happening to me. This was supposed to be MY time. My time of lasts in college, my time to find myself before heading off into the adult world. I didn’t want my life to stop again because of pain, because of my illness.
You may ask yourself reader, how did she get here?
Well reader, pain had been slowly taking over my life since the beginning of senior year, but I skillfully avoided it, and continued down my drinking/working/studying path. Putting a harder strain on my already tired of fighting body.
By the time I knew something was really wrong, I had about a 100 degree fever, and couldn’t pull up my jeans due to the new inflamed bulge on the right side of my butt. (A cute visual I know but all the more real and true for this story).
What did I do besides scream for my roommate and panic? I got ready for my sorority event and called my doctors' office at the same time. Priorities. This is the skillful balance of someone having learned how to keep living on with a chronic disease. You get stuck doing it all at one time, the being sick and the living life.
I was stuck in the hope of continuing a semi normal life. By going to the sorority event, I was trying to tell the pain that I was in control, and that this was not going to stop me.
The doctor on call that night, and the increasing sweating and pain, didn’t agree with my mindset challenge though. My lack of insurance in the state of Rhode Island was hindering me from being immediately taken to the emergency room by my sorority little. While life continued as normal around me, very few people knew the internal battle I was handling.
What do I do? What was happening to my body? How long did I have?
I knew in my gut there was only one thing I could do--I drove back to Connecticut, where I would have health insurance.
The pictures I took that night haunt me. I look almost normal in them, but behind my eyes I can see the pain and anguish I was going through. Plus the insurmountable anger I had towards life continuing on as normal around me. How so many of the people at this event had the choice to live their lives as they pleased. While I was enslaved to the whims of the disease inside of me.
Why was it always just my life stopping?
Why was I always stuck doing these types of things on my own?
These pictures show the invisibility cloak around me. With some good makeup and a cute outfit, I was almost easily blending into a group of my peers. While inside of me my abscess had wrapped itself around the end of my spine and was slowly leaking into me.
But you can never see those types of things on the outside (unless you were the roommate I showed my butt cheek to, then you saw it all hi!)
Now there are a couple of ways you, the reader, can view my actions. One, stupidly since I was in blinding pain and there was obviously something wrong with me, where I should have stopped and listened to the warning. But instead decided to play sorority girl and see if my life could be ok in that way. It was my super power speaking, it was the deep desire I had in me to continue on with the appearance of a normal life. The deep desire to just BE normal.
Or two, you can understand where I was coming from. I had already been sick for so much of my life at this point, (being 25 years old and just about to graduate college shows how I was "behind in societies standards of age" so much of my life had already been lost to time and pain, and so much illness. Why lose any more of it now? Why not try to carry on?
Whichever way you look at it just know it was a damn hard day for me. A day that stands out the most to me because of how torn I was mentally over every decision, and just how privately and invisibly this can all happen, even when the pain and disease could be that extreme. It’s the manifestation of the disease on the inside with the reflection of the mental strength and desire to be a part of societies normal events, on the outside. That is what haunts me. The reality of both.
Key takeaways were to never judge a book by it's cover. Check in on your friends. Take care of others. And finally NEVER choose a sorority event over your mental/physical health.
