Chronic illness. Let's just break it down for a sec...
- (of an illness) persisting for a long time or constantly recurring.
- a disease or period of sickness affecting the body or mind.
What really grinds my gears though, aside from having this awful disease, are the misconceptions that go along with having this and other chronic illnesses. My favorite phrase **dripping in sarcasm**, which people love to say to me and people like me is, "Well, it could be worse," I suppose that's true, but I also suppose that could be true for every single person on the planet, no matter how hungry, how sick, how beaten down.
It seems as though Hollywood and the media alike focus a lot of attention on cancer (see The Fault in Our Stars) or ALS (see The Theory of Everything), and the like, and rightfully so...I mean these are diseases that change people's lives, that cause tremendous battles for their victims and their families, that KILL people. These diseases need recognition to raise awareness and funds for research and the like. But, it is sometimes painful to have a disease that gets no recognition because let's face it, it's not cancer, there's no "cancer perks" here*. (*from The Fault in Our Stars, no ill intent!)
I have already had my first surgery at the age of 23, after only being diagnosed for 11 months. Every day I struggle with fatigue, unbelievable aches and pains, and, as you can imagine, bowel issues. Some mornings I feel like I can't get out of bed, but I do eventually, even if it's 2 pm. I don't know when I will feel sick. I don't know when I will have to throw up. I don't know when I will have to, to put it lightly, shit my pants. Oh, was that not light enough? It stinks (no pun intended) that I cannot get a handicap parking spot for those times where I feel so sick I won't make it to the store to vomit or go to the bathroom because I can't find a parking spot. It sucks that a lot of doctors and even family and friends don't take my physical pain seriously, as I do suffer with a severe autoimmune disease.
No disease is "glamorous", but if they were, mine would be the least glam of them all. It's about intestines and poop and colonoscopies. Nothing sexy about it.
What people don't know is that a lot of people with my illness, myself included, have taken chemotherapy pills. A lot of us have to get infusions, whether it be Remicade or iron. A lot of us inject ourselves with excruciatingly painful drugs. And a lot of us have had brushes with death.
Yes, that is right. Crohn's can kill you. Nearly every day on the Crohn's blogs and groups I follow, I see someone has lost their battle with the disease. I will never forget, one of my 10 obstructions, when it felt as though my intestines were going to explode and bile was pouring out of my mouth as I was gagging on it and I was in so much pain I thought I was going to perforate my bowel, go septic and die. It was scary, it was terrifying, and it never gets less scary. 12 ER visits in 12 months doesn't make them any easier.
Imagine sitting in a waiting room for 2 hours, in 10/10, and yes I mean that, 10 out of 10, pain, vomiting what seems like gallons of bile because your intestines closed up on themselves, only to have to take a one hour ambulance ride to a different hospital without any medications for the pain or nausea you feel. That metal box driving down city roads was just a blast, let me tell ya!
Back to what I was getting at...
What is different about cancer is that cancer is the bad guy, attacking your body. With Crohn's, your OWN BODY is the bad guy, it is literally trying to kill you. How can you get over that? How can you handle that your own body hates you, that you are, essentially, the bad guy.
How can you fight yourself? Sounds like some crazy sci-fi movie. It is hard, it is damn near impossible, and everything that makes the Crohn's better makes you weaker, makes your immune system shut down, makes you feel better and worse at the same damn time.
Aside from all of the physical effects of Crohn's, there are a lot of mental symptoms that occur when you are diagnosed with a disease that is chronic or "lifelong". Not knowing how you will feel day to day, not being able to make plans, not knowing when the next flare will land you in the hospital with another scar down your belly. The come and go depression and anxiety. The social aspects, not being able to make plans, or not make it to that event you waited for all month. There is no normal for the chronically ill. I suppose I shouldn't say that, I suppose I should say we evolve to discover a new normal, that is always changing and shifting depending on how we feel that week, that day, that moment.
There is no light at the end of this tunnel, the bulb burnt out the day I was diagnosed. There is no saving grace, my medications and my surgery are pushing me to remission, but we all know the remission is temporary. (Yes, IBD patients have "remission" too.)
I'm not here to compare diseases, not in any way shape or form, but I wish there was some light shown on these illnesses that there are no escaping from. Maybe we can use that light that isn't at the end of the tunnel anymore...
Love & Thanks,
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