I once lived with a secret that devastated my life.
My secret transformed my successful career into endless days of fear and evasion. I was terrified of the 20-minute commute to my office. I depended upon ruses and excuses to explain why I suddenly vanished from meetings. I refused to fly in an airplane unless I could reserve one of a few select seats. No one besides my wife, children and a few close friends knew what I was up against.
I, like millions of Americans, suffer from an inflammatory bowel disease, a painful affliction that among many symptoms, can make a person desperate to use the restroom dozens of times a day. For those of us with one of those diseases — such as Crohn’s disease or ulcerative colitis — the day starts by drawing a mental map: Where will I go today? Where are the facilities for potential pit stops? How much time will it take to reach them in case of all-too-frequent emergencies?
Hanging over me is the dread of suddenly and desperately needing to relieve myself but having no place to go. The problem has grown worse since the onset of the COVID-19 pandemic this year. Restaurants, bars, cafes and stores shut down. And when they reopened, signs appeared on restroom doors saying they are not available to the public.
This is an inconvenience for everyone. But for people with IBD, the current situation can result in personal crises and public embarrassment.
Take the case of Allyson Bain, who, like me, has Crohn’s disease. One day when she was 14, out shopping with her mother, she was denied access to an employee-only restroom. She was clearly in need, doubled over and in pain. Yet the management of the store refused to let her in. Ally experienced what many with IBD have in the past — an accident in a public place, something that still haunts her to this day.
Determined not to stand by and let this happen to other people, she took action.
The result was the Restroom Access Act, or Ally’s Law, a version of which has now been passed in Maryland and in 16 other states across the country.
Maryland’s law, in effect since 2013, requires retail establishments to allow those with Crohn’s disease, ulcerative colitis, a ostomy device or any other condition that requires immediate access to a restroom, to use an employee-only restroom during normal business hours, if certain conditions are met. For one, the customer must present the state-issued identification card which indicates they have an eligible medical condition and is signed by their health care provider.
Businesses can deny customers bathroom access if it is not safely accessible. The law does not require establishments to make any physical changes to their employee-only restrooms.
As long as the pandemic persists, there are two things Maryland must do.
First, the state must make sure that public restrooms are available, at least to people with covered medical conditions, when establishments are open. The state should make this requirement part of its reopening plans. Maryland should also provide clear guidance to these establishments to ensure restrooms are accessible, properly maintained and sanitized.
Second, in cases where establishments have no public restrooms available, people with IBD need to have access to employee-only restrooms. There should be a plan in place to make sure the management of restaurants and other establishments are aware of the restroom access law. There should also be a mechanism to make sure the law is enforced.
There are also things those of us with IBD and related diseases can do.
I carry an “I Can’t Wait” card from the Crohn’s & Colitis Foundation in my wallet that says I suffer from a medical condition that requires that I have access to a restroom immediately. I can show it to a resistant restaurant manager or a customer who might object to my quickly cutting ahead of him in a line. Having an official document can be a great help.
But the most important thing you can do if you have these symptoms is to make sure you have seen a medical specialist, usually a gastroenterologist, who can give you the right diagnosis and treatment.
There are probably hundreds of thousands of people suffering from Crohn’s disease and ulcerative colitis who have been given the wrong diagnosis or no diagnosis at all.
I suffered for seven years with the wrong diagnosis. I lived with the fear that I, too, may have an embarrassing accident in public.
I eventually quit my job and left my lifelong career as an advertising executive, all because of the secret tyrant that was governing my life. But eventually I found the right physician. I received a correct diagnosis of Crohn’s disease. And I was put on the right medications.
Today I am nearly symptom-free. But I still worry about having access to a restroom when I need it.
— JOHN CROSSON
The writer is chair of the Crohn’s & Colitis Foundation Board of Trustees. Dec. 1-7 is Crohn’s & Colitis Awareness Week.