Inflamed and Untamed

Every time I see a commercial on the television or a story done on TV of a patient who has Crohn’s disease or ulcerative colitis I immediately get excited. My first thought is “yay, finally more awareness!” and then I quickly am embarrassed at how wrong they get it and then that embarrassment turns to anger. 

Frankly, it’s insulting. It gives people watching who don’t have Crohn’s disease or ulcerative colitis the wrong idea of what our disease is or is like. Today I watched a report that appeared on the local news last night about a little girl who has ulcerative colitis. Except that when the reporter said what she had they called it “colitis disease”. WHAT? “Colitis disease?”, that’s a new one I have not heard before. That might be a little error to most people but I guess to me it’s a big deal. Because this is my life, it’s our lives, and to us we live with a disease that isn’t going away any time soon so it would be nice to just have a little understanding and awareness.  If they were doing a report on a disease they had personally, I bet every little detail would be correct. It also made me wonder who is doing these reports and where are they getting their facts from? Yikes! 

The report went on and I kept listening…they moved on to talk about what the disease is, except in my opinion they made it look like Colitis Disease (haha) isn’t a big deal at all. This was the only description given: “Colitis (for the love of unicorns please say ulcerative colitis) is like Crohn’s. Both are types of inflammatory bowel disease attacking different parts of the gastrointestinal tract.  Symptoms include abdominal pain and persistend diarrhea.”  

That’s it?! Is it just me or does that description just make IBD seem like it’s nothing more than a little tummy ache or maybe what you would experience from food poisioning? No wonder the world has IBS and IBD confused.  If my symptoms were as simple as abdominal pain and diarrhea life would be a lot easier, but what they failed to get across is that the abdominal pain is the worst pain you will feel in your life. It will stop you in your tracks and make you fall to your knees. It feels like your insides are shredding up and on fire and that a bunch of baby kittens are scratching their claws down your intestinal walls.  And what about the bleeding that IBD causes in your GI tract? Not even a mention of that. They wouldn’t even have to go into the gross details of how some of us crap nothing but a big red sea into the toilet and sometimes require blood transfusions to replace the loss of blood, and how physically tired that makes your body and how anemia becomes an issue. They could have just said ulcers in the GI tract cause the patient to lose blood. I would even be happy with that! No mention of surgery either. If you ask me, to get across to the public that IBD is a serious disease you should at least mention that a lot of us are faced with surgery to have parts of our digestive tract removed and how much that alters life. No mention of the large amounts of sometimes dangerous medications we take, no mention of side-effects, no mention of extraintestinal manifestations like joint pain, liver problems, skin and eye problems. Nothing was said on how disabling it can be and how not only does this disease affect you physically but in all other aspects of your life as well.  Not a single word about hospitalizations or anything like that. Nope. Just abdominal pain and diarrhea. Well okay then…

What the report DID mention was that the little girl stopped eating some of her favorite foods and she’s doing much better. Which again gives people the idea that food is the cause of our disease and also the “cure”. People are mislead to believe it’s like celiac disease or irritable bowel syndrome because that is what they are being told. 

I also find interesting that this report was done because of the upcoming Take Steps walk this weekend in my area. The story was trying to share the life of a little girl living with IBD and convince the public why it’s important to donate their money. But if I didn’t have Crohn’s disease and watched this on the television I wouldn’t donate any of my time or money because the story didn’t do anything to make me believe that this was a serious disease. They made it look like a tummy ache and a food problem. Ugh! 

Now let’s talk commercials. I see them come on late at night (because why talk about IBD during the day when people are watching?) from big pharmaceutical companies that are just awful. If you live in the US I am sure you’ve seen the Humira commercial where they say “maybe the cause of your Crohn’s disease is underlying inflammation” or something like that.  REALLY? WOW. Inflammation you say? I had no idea my INFLAMMATORY bowel disease had anything to do with inflammation. Thanks Humira for pointing that out. 

(Oh wait! Here, I found it. http://www.youtube.com/watch?v=FohMzDp3NYc What if the underlying cause of your Crohn’s is damaging inflammation? bahahaha) 

Anyway, I could go on and on about the terrible commercials and stories I have seen on television and in the paper about Crohn’s disease and ulcerative colitis. Not a person out there is confused at how serious cancer is. And let me just stress that I think people should know how serious and devestating cancer is because cancer is horrible. BUT it’s not the only horrible disease out there. We get to see on TV and commercials cancer patients who have lost their hair, who are in the hospital, who are terribly sick. But you don’t ever get to see IBD patients at their worst. People are misinformed to think that we just have chronic “flu-like” symptoms and therefore we are faced with unsympathetic co-workers and friends and family who don’t understand how awful we can actually suffer.  

I guess I just feel so strongly about it because like I said, it’s my life. This is my every single day, living with a disease. And so many patients live in silence and are too afraid to talk. So I talk, and I won’t stop talking because we need awareness.  I don’t want sympathy and pity from people, I want understanding. I want the people in my life to understand just how difficult and disabling this disease can be sometimes. I want them to understand how strong you have to be to go through this, and to be honest sometimes I just want a pat on the back and a “way to go!” 

-Sara http://agirlwithguts.tumblr.com/

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