When people presume to know what I go through on a daily basis.
-They don't.
When they think maybe I should just do exactly what my doctor says.
-I do.
So then they tell you that you are cured if you did what the doc told you to.
-Um, no. Unfortunately that's not how it works.
Then they tell you that you are hypochondriac.
-Again. I kind of have to be. I have an immune system like a cancer patient undergoing Chemo.
Chemo? They say. So then you have cancer? My uncle had Colon cancer. It was horrible.
-No I don't have cancer. And no I said LIKE chemo. I did not say I am taking chemo.
Or they tell you that their long lost cousin's friend's brother's friend's former roommate had Irritable Bowel Syndrome and all he has to do is stay away from certain foods and he's perfectly fine.
-Once again I have Irritable Bowel Disease. Not Irritable Bowel Syndrome. Disease not Syndrome. IBD not IBS. Two totally separate things. Google it.
So you say that your joints hurt? You have Crohn's Disease, not Arthritis. And what's this about sores in your mouth? Wrong end sweetheart.
-CD is a full body disease. You can get inflammation anywhere from your gums to your bum. And this also includes your joints, muscles, skin, eyes, you name it. If it's got blood supply and is able to accept TNF-a it's fair game.
Then they say, Wow! You sure know a lot about doctor stuff. If you got it from the internet you need to be careful what you read because not everything on there is true.
-Yes. I realised this in Grade 6 when doing research and almost believed Wikipedia's article saying that Hitler invented the printing press. Don't worry. I get all of my information from very reputable sources approved by the people I trust with my life.
Well, why are you even looking up stuff. That's why the doctors get paid so much money. Just let them worry about it.
-Believe me. I would love to not have to be constantly looking up symptoms to make sure I don't need to be at the hospital. Or looking up a new medication to make sure that this rapid heart best isn't going to kill me in my sleep tonight. It's something that I do for my own health and in my mind it's worth every minute.
And my absolute favourite....
But you don't look sick. So how bad can it be really?
-First off. Crohn's Disease is a very internal thing. I can look perfectly normal when you look at me. But if you were to look at my latest set of labs you will see that my c-reactive protein is through the roof this month, my platelets are lower than the ground under your feet and my iron is so high that I'm going to have to go and get a pint drained out of me tomorrow (more on that in another post). And I'm in pain. Sometimes excruciating.
The introvertedness of this disease is what makes people think it's not as bad as it really is. But believe me when I say that behind the smile we exude. Or the laughs we force out. We are in Hell.
How can you help?
-Stop berating us with questions and then belittling our answers. If you have a true question most of us Crohnies are more than willing to answer it in a way you can understand. Just give us time. It's a complicated disease. Or just treat us like any other person. We like to "feel normal". If only for a little while until the next bathroom break.
Or just smile.
You have no idea how much it helps.
