Response to the new CCFA AD from a Parent, thoughts??

This is a comment from a parent in reaction to the post I wrote “We React to the New CCFA Ad Campaign” (http://keepingthingsinsideisbadformyhealth.wordpress.com/2013/01/10/we-react-to-the-new-ccfa-ad-campaign/)

I found this very interesting because while inflammatory bowel disease IS NOT JUST ABOUT THE BATHROOM, what makes living with ulcerative colitis or crohns disease so difficult is really the bathroom part of it.

What do you all think about this comment from a parent of an IBD sufferer?

My daughter asked my opinion on what I thought about this ad campaign because there seems to be a bit of controversy within the “community”. As a sufferer from ulcerative colitis for many years leading up to a permanent ostomy, she has endured endless trauma from 14 surgeries, 250 nights in the hospital, endless procedures etc… therefore, although I have not physically experienced IBD, I consider myself an expert.

What is the essence of Crohn’s and Colitis? Really think about it… it’s about having to run your life in a stressful, high anxiety manner revolving around going to the bathroom. I listened all night for years, as my daughter ran to the bathroom 10-20 times. I saw her basically stop eating because eating meant going to the bathroom. I slept every one of those 250 nights in the hospital with her and during the colitis period of her hospitalization, she woke me every 20 minutes ALL NIGHT LONG to help her get to a toilet because she had IV’s in her and she was worried about not making it in time. I’ve had to pull into dirty gas stations so she could run in. I saw her hide from her friends for years because she couldn’t talk about her “bathroom issues” or she didn’t want to be out or stay over a friends house or go to a party and that was all about the anxiety and stress of worrying about going to the bathroom. In my humble opinion, Crohn’s and Colitis is about living every second of your life in a panic about having to go to the bathroom or, even worse, not making it to the bathroom in time and that is what these ads are all about.

If you see Dennis Leary or Danny Aiello in ads for the Lustgarten Foundation which does research to find a cure for pancreatic cancer what you see is a spokesman who has a friend or a son who died from this cancer and they’re asking you for your help. The St. Jude Hospital does show child cancer patients and yes, they are bald but don’t look that sick but…you get the point. Human nature would not allow us to watch these ads if they showed patients at their worst. We all have a good idea what a cancer patient goes through but we sure don’t want to see it.

Having IBD means going through all the horrible experiences that Sarah and Marisa and thousands of others in the community go through every day. Its terrible, it’s tragic, it’s heartbreaking , it’s the f’ing worst but the Crohn’s Colitis Foundation isn’t going to put those terrible aspects of these illnesses out there. It won’t work and as Lauren points out, it will never get shown.

So, in a quirky way they have portrayed the essence of what ruins lives every day and they show, very clearly, that these illnesses don’t discriminate. Imagine being a bride in a beautiful white dress worrying about having an accident!! Imagine how hard it is growing up with it or playing sports or just plain living in a constant state of panic that you’ll shit in your clothes. That’s what they’re trying to do to raise awareness and I think, in this somewhat silly way, they have gotten to the core of life with IBD.

Nothing negates all of your suffering. No one can truly understand how hard it is to try and “be normal” unless you live it but in an effort to bring awareness and to drive people to support their foundation…I think they’ve done an ok job.

Tagged as: , , , , , , , , , , , , ,
  • http://www.inflamed-and-untamed.com/ Sara Ringer

    These are all very great points and very real. I think that what this parents mentions above is a lot of our stories but that these ads alone when someone WITHOUT IBD looks at them will only relate it to going to the bathroom. As in that we just use the bathroom more or have something like IBS or the flu. While many of us have experienced anxiety over the bathroom, fear of being away from a bathroom, fear of using others bathrooms, isolating ourselves because of a constant need to use the bathroom, etc. I don’t think people will gather all that backstory from looking at ad after ad of feet hanging out of the stall. They don’t get the anxiety, fear, isolation, pain, accidents, urgency, etc.

    Again, the above mentioned paints a very real picture of what someone with IBD goes through and how much her daughters life and so many of ours has revolved around the bathroom I would like to see more than just restroom stalls in ads. The thing that made all those trips to the bathroom so difficult is the embarrassment, anxiety, isolation, pain, bleeding, fear, etc. and I wish that people were able to understand that as an IBD patient we are not just using the restroom more but that so much more goes into it.

    In the end there will be no “one size fits all” ad out there for IBD. That is impossible. I have shown a number of my friends without IBD the ads recently and they all didn’t get them. I asked their opinions and heard so many of them say “I have that happen to me too” when in truth they don’t. They were talking about having to run to the bathroom every now and then. Everyone in America has that. They gathered from the ads that it was something similar to what they experience when they get the flu and my fear is that IBD will be associated with IBS. I then asked them if they honestly would have read the fine print on the bottom or taken more time to learn about IBD and they said no. The sad truth is that most people don’t care unless something directly affects them.

    Again, good points listed in her response and I completely see where she is coming from. I have been there so many times with the bathroom issues and having my life ruled by that but I still want others to understand the seriousness of the disease. The ads to me do not reflect that. While I see all points being made they still do not sit well with me personally.

  • http://aguywithcrohns.wordpress.com A Guy With Crohn’s

    I agree with Sara. I would speculate that most people wouldn’t get it and she confirms that. I think that most people that don’t know what Crohn’s or Colits is won’t understand that we go to the bathroom 20 times a day.

    I think what ever we feel about the ads though, it is done and out there. What we need to focus on going forward is education. Hopefully CCFA will do more ads and better ones at that. I know when they made these ads they used a focus group of people with and without IBD. I wonder how big the group was. Maybe they should use a lot more people with IBD.

    I think because I live with CD that I know there is so much more so to me seeing someone on a toilet means nothing. But that is my opinion. CCFA’s marketing saw something different. That is what we have to live with now.

  • kate

    I was going to write something similar to the above comments before I even saw them.

    In my experience, the biggest awareness issue related to IBD is that people have no idea it’s a serious disease, not an annoying symptom. The bathroom stall campaign does nothing to educate people that it is serious. I can’t tell you how many people over the years have said to me “oh I have that too!” and I find out after a few questions that they have IBS. It doesn’t help that the acronyms IBS and IBD are so similar, or that IBS is sometimes referred to by the misleading and incorrect name ‘spastic colitis’.

    There are lots of diseases where most non-sufferers will never experience the hallmark symptom – for example, the overwhelming majority of people without epilepsy will never have a seizure, and the majority of people without MS will never have temporary paralysis. But 100% of people have had diarrhea, and most will have it at least a few times a year. Millions of people have diarrhea regularly because of IBS. And 99.9% of the time, it is not serious. That’s why it’s so understandably difficult for people to equate a condition that is so common and usually requires no treatment to being a serious disease. I’m one of those people- as a teen I had diarrhea daily for six months and it was distressing, but it didn’t even cross my mind to ask my mom to take me to the doctor, because it was surely ‘just a bug’ that kept going around. When I finally fainted and was found to have a hemoglobin count of 5.3 I was diagnosed. So there- even my pre-diagnosed, unbiased self had no idea diarrhea could be serious.

    THAT is why I dislike the campaign. I think it does nothing to elevate IBD to a serious disease and many people will continue to think it’s somehow related to IBS.

  • asizCreatives

    There’s nothing left I could say that the above 3 comments haven’t already said….