Once in a while, someone comes along and says something that I just can’t ignore. If you are a regular on the IBD blog scene, you’ve probably seen this, fumed, and snarked back. If not, let me be the first to offer you this:
As I said on my personal Facebook page, this type of pronouncement brings out the advocate in me. Not the angry, ”it’s not fair,” advocate, the “I’m going to educate you and hope you have an empathetic bone in your body,” advocate.
As a young woman who was diagnosed with Inflammatory Bowel Disease (IBD) at age 16 (now 30) and has had over ten surgeries to either remove, reconstruct, untwist, tack down, or stretch my intestines over the course of my diagnosis, I seek both to understand your article, and to attempt to educate and inspire empathy in you and your writing. Unfortunately, as you said in your article, this problem is rare compared to many more publicized diseases. I will go into graphic details so you hopefully get the picture. When I was 16 years old, making a scrapbook for my WWII hero grandfather for his birthday I had the sudden urge to use the restroom. When I stood up to flush the toilet, I noticed blood running down my leg. This was not menstrual blood, it was the first of many times I would defecate exclusively blood and mucus in my life as a Crohn’s patient. A year prior to this, I was taken to the ER by my director-of-the-state-Republican Party mother who carried me by sheer will and determination after an evening of ceaseless, uncontrolled blood-and-mucus-diarrhea and vomiting. I cannot accurately represent the stabbing, writhing pains of the bloody and ulcerated intestines of an IBD sufferer. I can tell you that I have prayed for death in my bathroom floor, been unable to eat, been hospitalized more times than I can count, taken a plethora of dangerous drugs, and soiled myself regularly in my 14 years of this experience. The Crohn’s and Colitis Foundation of America (CCFA) estimates that approximately 1.4 million people are diagnosed with IBD. ( http://www.ccfa.org/what-are-crohns-and-colitis/ ). On a good day, when an IBD patient such as myself is not hospitalized, having surgery, or bedridden, we occasionally like to get out and stimulate the economy. On more than one occasion I have politely asked (and waited) after presenting my “I can’t wait. I have IBD” bathroom access card to use a facility. Thankfully, most people have been accommodating and understanding to me. Those who haven’t were after the fact because they got to witness IBD in action. While soiling yourself in front of a group of strangers may seem like small potatoes to you, it can be emotionally devastating to patients who are trying their damnedest to live a “normal” life. It’s not that we don’t want to hold it. It’s not that we want to inconvenience anyone. It’s that our bowels do not function as yours do. It’s that, I don’t have a large intestine (colon) and that several surgeries and the disease itself do not allow me to hold my bowels. (I have a J-pouch, not an ileostomy.) I am an attractive, employed 30 year old woman who regularly soils herself. While I have been able to successfully deal with this and integrate it into my life, become an advocate and sit on the board of many IBD-related charities, younger patients often have a harder time shrugging it off, as the boy you mentioned in your article probably does. These diseases often become active during teenage years, and I hope that you can consider how this might be especially embarrassing to a young person who besides having the misfortune of dealing with a painful, debilitating, life-long disease, would suffer slightly more emotionally if they publicly soiled themselves in a group of “friends” , than say, a seasoned veteran such as myself. While I understand your opinion that any store owner should have the right to deny restroom access to a customer, I feel you would change your tune if you had a complex and life-threatening autoimmune disease or loved someone who did.
I cannot hope to illuminate my condition for you in an e-mail, but I assure you that patients like myself, are doing exactly as you suggested and launching campaigns for awareness, or are privately e-mailing reporters to provide a patient-perspective.
My question to you is, why are you so emphatically against allowing a sick person access to a bathroom? As an attorney friend of mine commented, “I could think of a couple of legitimate legal reasons, which I supposed would be the crux of the article, not ‘who needs more laws, if you educate the public, they will do the right thing’.” The only reasons you list are your disgust for “another law” and a scenario where a salon was robbed. My feeling is that if you have experienced these diseases first-hand as a patient or caregiver, you might better understand a patient’s desire to have access to a restroom by presenting a document that proves our need. It just seems like a very strange soapbox for you to stand on, so tell me: why?
That’s the end of it. I tried to keep the snarkiness to a minimum. I fear some may have slipped under my ever-vigilant radar.
So, fellow gutless, what’s your reaction to all this?