CCFA’s second annual IBD Awareness Week ended last Friday,
and I have continued to ponder the subject of awareness. I don’t think anyone
(especially Crohn's and colitis sufferers) disagrees that promotion of awareness didn’t end on
December 7. This must be a year-around effort. I’m glad that IBD Awareness Week
has been officially recognized, but I feel we’re just getting started, and that
we’ve got some substantial ground to cover.
“Over sharing”
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.
Community
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.