When it comes to chronic illness, ignorance is not bliss!
This week a friend of mine was admitted to the hospital for liver and kidney failure because of harsh medications. One of the many medications given to those living with Inflammatory Bowel Disease. Having a chronic illness such as Crohn’s Disease and Ulcerative Colitis are much more complex than a tummy ache or a stomach bug.
I’ve been talking to some fellow IBD Ninjas about things they wished outsiders understood about Crohn’s and UC. Everyone’s main complaint was that people do not understand or realize just how serious these chronic illnesses are.
Many of us have heard some of the most ridiculous things come out of people’s mouths in the midst of our suffering. Some have even wished that they were sick and in the hospital (not even kidding!).
A lot of people (but not all) with Inflammatory Bowel Disease are underweight. Some of those wishing to shed a few pounds have actually told us that “It must be nice to be able to eat whatever you want and not gain any weight!!” Yes, and it would also be nice if we were able to eat whatever we want without the consequences of immense pain and suffering.
Others have said things like, “It must be nice not having to get up for work every day! I would love to sleep in and do nothing.” I can’t tell you how many times I was confined to my bed because of Ulcerative Colitis. The countless days I spent wishing I could actually earn my keep as I lay in bed afraid to move due to excruciating pain. Even if I so much as rolled over it would send me flying to the restroom as quickly as possible. Definitely not the kind of life I’d like to be living, I can tell you that!
Some people have been accused of not having enough faith, not praying hard enough, angering God, bad karma, etc., etc. I can tell you right now, some of the kindest, thoughtful, most religious people I know have had some kind of earth shattering thing happen to them. Whether that be a disease, an accident, loss of a child, loss of a home, etc., etc. Not having enough faith or “angering God” has nothing to do with it. Colitis Ninja was not created to get into theology, religion or apologetics, but if you are interested in discussing the religious aspect of suffering, please feel free to email me. I do not mind having a friendly discussion with you… and I digress.
Another “favorite” line is, “You aren’t sick. You look fine. You’re just anti-social and lazy.” There are many people with Crohn’s and UC who are in bed begging for the pain to go away. Hoping that miracle drug they just started will put them in remission and help them live a normal and more active life.
It is especially hard on those who were physically active before their disease hit. Dancers, gymnasts, runners; I myself was a student of Shotokan karate. I was mere months away from my black belt when my symptoms started. I thought that once I had my diagnosis and the medicines kicked in I’d be able to jump right back into it…
How wrong I was.
The medications made my joints swell up causing severe aching and weakness. Swollen joints and damaged organs aren’t the only things that plague us because of medications. There are so many more including infertility, hair-loss, psychosis, nausea, vomiting, Crushing’s Syndrome, tooth sensitivity, severe acne; and the list goes on.
This week, I had one of my coworkers stop me at work and say, “Hey! I read some of your blog.” Oddly enough, at first, I felt my face go hot. Oh great. I thought, Now he knows my embarrassing symptoms. But then he said, “I didn’t realize how serious it was. I have a lot of respect for you. You’ve gone through quite an ordeal.” Then he gave me a fist bump (and yes, we DID explode it!). I thanked him and went on my way. I had never mentioned to my fellow coworkers that I had a blog… perhaps he saw my profile picture on my email? Or maybe found it on Google+? I don’t know…
Another coworker also stopped me this week to ask me how I was doing. I told him I felt a lot better and he proceeded to tell me that his friend’s son was currently in the hospital with Crohn’s and that they had to remove his large intestine because it had ruptured. I told him, that’s the exact same procedure I had and was able to tell him that Crohn’s and UC were a lot more serious than people thought. It feels good to be making a difference and helping to destroy the stigma of IBD. Again, I digress…
We’ve heard a lot of ridiculous things (too many to name here). If you know someone who has Crohn’s Disease, Ulcerative Colitis or any other chronic illness, please, try to realistically put yourself in their shoes. Their suffering is real. This is not something any of us would ask for (many of us wouldn’t even wish it on our worst enemy–believe it or not!). This is simply the cards we’ve been dealt. People still die from these diseases. Please, talk to others about the seriousness of IBD. The more awareness we raise, the better the chances we have for finding a cure.
