Hope

Love this graphic; I borrowed it from CCFA.

Shame on You, Kerry Dougherty

The Virginia legislature recently voted down Virginia House Bill No. 1375, the Restroom Access Act. This is one of many bills more frequently being proposed around the country (such as Ally’s Law, passed in 2005 in Illinois). These laws grant restroom access to individuals who suffer from eligible medical conditions which require the sudden and urgent need to use the facilities. Eligible medical conditions include Crohn’s disease and ulcerative colitis (or any other inflammatory bowel disease).

As one of 1.4 Million Americans who suffers from inflammatory bowel disease (IBD), this is a frustrating loss, even if it happened at the state level. We not only battle our own diseases on a daily basis, but must also fight judgment, misunderstanding, and advocate for awareness. But for Kerry Dougherty, columnist for TheVirginian-Pilot in Norfolk, Virginia, this killed bill is a reason for celebration.

In her article, “Bathroom bill ends up where it belongs – down the drain,” Ms. Dougherty starts out by stating, “Nothing gets some folks excited quite like a spirited discussion of public restrooms,” and, “I should know,” referring to a past article she wrote on the use of handicapped stalls. I would like to respond to her article.

Ms. Dougherty, I’m afraid you still haven’t learned the lesson you should. Your past experience may mean that you “should know” that writing about restrooms causes some people to get excited about the topic, but it certainly does not mean you have learned anything from your experience, most certainly not about empathy.

While you may “know” the topic of restrooms stirs up debate, it is clear to me that you really don’t know why this is such an important topic to many people – the approximately 1.4 MILLION of us who suffer from inflammatory bowel disease. You don’t really know.

You note that the bill was killed in subcommittee, with out a single vote of support. This figure is sad, not because you apparently feel it’s notable, but because it speaks volumes about how misunderstood and invisible these horrible diseases are.

You call the bill “over-the-top” and say it would have attempted to “legislate common sense.” I agree! Why should we have to legislate something like this? Unfortunately, as the saying goes, “common sense isn’t common.” I WISH this weren’t something that needed to be legislated. Have you taken the time to read Ally Bain’s story? It seems common sense should have prevented her incident, don’t you agree?

You say this law was an effort to “as a first resort – to fix a rare but troublesome problem.” First, this isn’t a first resort (more on that in a minute). Second, yes, it’s troublesome - extremely troublesome. But rare? How do you know? How many teens and adults do you think would publicly admit to having had a public accident? Is this criterion for drafting a bill that – I’ll state it again – will assist approximately 1.4 million Americans in performing daily functions? That IBD sufferers must first sign a petition stating, “I crapped my pants” in order to prove that these accidents happen?

You also say you’re “sympathetic to folks with some of these bowel ailments,” and that “Sympathetic business folks ought to help when they can.” They ought to, and I understand they won’t always be able to. But the issue is, many don’t or won’t. May I again direct your attention to Ally’s story, or perhaps remind you of the Alexandria teenager you cited in your article?

You go on to introduce “the flip side.” The flip side to what, may I ask? It’s apparent to me you did little to no research on inflammatory bowel disorders. You never presented the viewpoint of any single sufferer of any of these diseases. You merely presented an, “aw, shucks, that must really suck” attitude with that pitying nod of understanding that you “know” what it’s like to need to use the restroom with any sense of urgency. You don’t know.

And then, we get to hear your pedicure story. You witnessed salon workers doing the right thing, only to be robbed. That was wrong, and I hate that it happened. Did you consider alternate scenarios? What if that woman had been an IBD sufferer, and she not only made it to the restroom in time, but no one’s wallets were stolen? What if that woman had been an IBD sufferer whose request was turned down, and you had to witness her losing the contents of her bowels into her pants? IBD may be “rare, but troublesome”, and this may be Pollyannaish of me to admit, but I still have faith in the human race and believe that the scenario you cite is also “rare, but troublesome.”

Further, if you read the bill, it specifically states that access is provided if the “employee toilet facility is not located in an area where providing access would create an obvious security risk to the retail establishment.” It is my hope that such clauses would make business owners consider that such requests might be made and be certain that they can safely accommodate them.

Finally, you state that, “the best thing Crohn's sufferers could do would be to launch a public relations campaign to raise awareness.” May I be the first to sarcastically THANK YOU for your suggestion? This idea is a breakthrough! I may take that and run with it!

But in all seriousness, please let me introduce you to the Crohn’s and Colitis Foundation of America, an organization which spearheads many fundraising and awareness efforts. Also, you can google “Crohn’s disease” (or “ulcerative colitis” or “ibd”) and see that many people are doing what they can to spread the awareness (however embarrassing that can be). The reality is that in the meantime, we still have to use the restroom - urgently, at inconvenient times, and in inconvenient places.

So, shame on you. Not for having the opinion you do, but for failing to research and understand the driving force behind the Restroom Access Act.

Ms. Dougherty, I would not wish Crohn’s on anyone, even you. I especially hope that no one close to you ever suffers from this ugly disease, as my fear for them would be that they would lack the empathy and support they would need and deserve from you.

Fartastic

Let's face it: anyone in a relationship with a crohnie is going to have some unfortunate side effects to deal with. I am BEYOND fortunate that I married a man with a high level of tolerance and a huge sense of humor. It makes life so much easier!

This video makes me laugh out loud (can you say, "CUPPA CHEESE!")? I think the only move missing from this is the "Dutch Oven."

Enjoy!

 

A Few More Thoughts on Awareness

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.

Why Crohn's and Colitis Awareness is Important

This week (December 1-7) marks the second year the CCFA has sponsored "Crohn's and Colitis Awareness Week."

Senate Resolution 199, passed on November 14, 2011,  "Expresses support for the goals and ideals of Crohn's and Colitis Awareness Week. Expresses appreciation to the family members and caregivers who support people in the United States living with Crohn's disease and ulcerative colitis. Commends health care professionals and biomedical researchers who care for Crohn's disease and ulcerative colitis patients and work to advance research aimed at developing new treatments and a cure."

We all have our own stories, and part of mine is struggling with Crohn's disease. Even among the 1.4 million Americans living with IBD, each story is unique, with it's own demographics, symptoms, diets, and treatments. Each story is important and relevant, and they are why increased awareness is vital.

Have you ever seen the 1985 flick "St. Elmo's Fire?" (If you haven't, please do.) In the movie, there is a scene where Rob Lowe's character goes to a dinner party with a friend whose mother is talking about someone who has been diagnosed with "the cancer." But every time she utters the word "cancer", she whispers it, like it's something too awful to be said out loud.

That's sort of how I sometimes feel saying that I have Crohn's. It's not widely known or understood. Whisper it with me now: "I have Crohn's disease." No, it's not something that everyone needs to know, and it doesn't need to be shared with just anyone. But I would like to acknowledge my disease and the impact it has without feeling like it some how makes others cringe, or that it invalidates some of my other traits or qualities.

For what other reasons is awareness of these diseases important?
 - More than 70,000 people (children and adults) are diagnosed with a form of IBD every year
 - Crohn's and Colitis are not only about having to use the bathroom; these stories involve pain, fatigue, surgeries, hospitalizations, and medications - impacting not just the patients, but the people around them
 - For my children!
 - Awareness is a first step toward finding a solution
 - For increased acceptance - Ally's Law (The Restroom Access Act) is an important step!
 - Because Crohn's and Colitis are among a family of autoimmune diseases whose rates of diagnosis are on the rise
 - So we can talk about it, without shame

The year I was diagnosed, I found the little plaque below in the university book store. It has had a place on my desk ever since. It says, simply, "Things happen for a reason, just believe." Whether this statement is true or not, is has helped me through some tough days. I always believe it will get better.

I believe in building a community and awareness. I believe in Crohn's and Colitis Awareness week, and what it can achieve.