There was an Op-Ed piece by Roger Cohen that ran in the New York Times last Thursday, addressing the issue of over sharing online. It struck a chord with me, because it was published during a week in which I was trying to promote awareness of a topic that, for much of the general public, would be considered “too much information.” I used my social network to share some statistics on IBD in an effort to increase awareness. I did doing so sparingly, cautiously, and with careful consideration of my audience; I didn’t want to over share. Increasing awareness on a taboo subject is difficult.
My messages weren’t necessarily ignored, but they weren’t exactly accepted or shared or even acknowledged much, either. After all, IBD is a medical condition that deals with the digestive system and bodily functions. Shhh....it’s impolite to talk about these topics in public. It’s “Too much information.”
Too Much Information. There’s even an acronym for it now: “TMI.” People just aren’t comfortable hearing about bathroom habits, abdominal pain, and bodily functions (which, as far as many people know, is what IBD is – bad diarrhea). We are taught about this inappropriateness from the time we are children. Poop is “gross.” No potty talk or fart jokes allowed. Discussing these things is uncouth. Even in this About.com article describing what “TMI” means, bathroom habits and private medical conditions are cited as examples of things that are TMI – the sharing of “unpleasant private information.”
It seems as though we have our work cut out for us.
I do have hope. Breast cancer awareness has grown considerably since Breast Cancer Awareness Month was first instituted in 1985 (granted, breasts are significantly more glamorous than intestines). And Katie Couric’s televised colonoscopy in 2001 not only helped increase awareness of colon cancer, but resonated so well that it has been credited with a 20% uptick in screening colonoscopies in the years that followed.
IBD has a significant “ew” factor to it. But my hope is that increased awareness will help people realize that this disease isn’t only about diarrhea, it could happen to anyone, and it has a significant impact on people’s day to day living.
For me, IBD Awareness week went beyond spreading awareness. It also provided another way to connect with a community, one that I have rediscovered after grappling more often with my disease again. It is encouraging to know that I am not alone on this journey.
I recently had the opportunity to read Anna Quindlen’s memoir, “Lots of Candles, Plenty of Cake.” In it, Ms. Quindlen reflects on “Life in the 30’s,” a New York Times column she wrote in the 1980’s and 90’s about parenting. (See? Sharing personal stories was happening even before social networks!). She ponders letters she received from readers:
““I feel like I’m not alone,” some of those who wrote to me said. And that sentiment changed my life. That’s what’s so wonderful about reading. That books and poetry and essays make us feel as though we’re connected. As though the thoughts and feelings we believe are singular, and sometimes nutty, are shared by others. That we are all more alike than different. It’s the wonderful thing about writing, too.”
Although she was talking about connections made over motherhood (another topic I am inherently interested in), isn’t that part of what we’re trying to do? Find other IBD sufferers? Find camaraderie in something that can be isolating? Help each other muddle through these sometimes awful experiences?
People tend to seek out others in similar circumstances. By sharing our stories, through IBD Awareness Week and otherwise, we can also build our community and find each other. And by aligning with one another, we can help raise awareness. After all, there is strength in numbers.