Crohn's and Disability
It was recently brought to my attention that July is Disability Pride Month.
The Americans with Disabilities Act (ADA) was signed by President George H.W. Bush on July 26, 1990.1 This landmark law prohibited discrimination against people with disabilities. As a member of the IBD patient community and a patient advocate, that got me to thinking...
I live with Crohn’s disease. Technically, this categorizes me as disabled, right?
Is Crohn's considered a disability?
Well, according to the ADA, the definition of a person with a disability is typically defined as someone who “has a physical or mental impairment that substantially limits one or more major life activities.”2
During periods of disease activity, when I am home-ridden and bathroom-bound, Crohn’s disease absolutely limits my major life activities.
Heck – it honestly limits my minor life activities. Have you tried showering during a flare? The debilitating pain, the frequent and urgent trips to the restroom, the complete physical weakness, and the crippling fatigue. That absolutely impacts my life activities.
So, do I identify myself as disabled?
Today, right now, I do not.
But I think this is incredibly tied to the fact that my Crohn’s disease has been extremely well managed for the last few years.
But when I first got sick, when I spent years in the throes of undiagnosed and unmanaged Crohn’s disease – yes, absolutely I considered myself disabled.
While I may never have referred to myself as disabled, I certainly felt extremely limited by a major medical condition over which I could not gain control.
When I did consider my Crohn's a disability
During graduate school, I had to withdraw for a semester because I spent too many days out of class while admitted to the hospital. When I returned to school, I had to ask for accommodations because it was impossible for me to sit through 3 hours of class without running to the bathroom or doubling over in pain.
This felt difficult and embarrassing, but my university had a disability services program that supported me. Utilizing their resources made me feel validated in my struggles and in my need for help.
If the office of Student Disability Services worked for me and with me, does that mean that at the time I was disabled? Perhaps.
Did it mean that I needed more help than the average healthy student at that time? Absolutely.
Workplace accommodations for Crohn's
According to the Job Accommodation Network, gastrointestinal disorders (including Crohn’s disease, gastroparesis, ulcerative colitis, irritable bowel syndrome, spastic colon, and diverticulitis) do qualify individuals for work-related accommodations.3 Obviously, specific accommodations depend on the symptoms and severity experienced by each person.
It's also important to consider the utilization of various medical devices and appliances (ostomy, PICC line, feeding tube, etc.) that many IBD patients are required to manage, and the way those affect both their disease management and their limitations within major life activities.
Disclosing Crohn's at work
I have disclosed my Crohn’s disease in every job I’ve worked on-site since diagnosis. It has always felt right for me to have my supervisors know about my illness in case there are appointments, hospitalizations, and unexpected absences.
Over the last few years, as more and more of my work has become remote, my need to share my Crohn’s disease status with my employer has decreased. Any accommodations I need for work minus taking a sick day have been accessible to me as someone who works from home – and this is something I am overwhelmingly grateful for.
I’m also thankful that if and when I do return to an office setting, those accommodations will always be something I can ask for when needed.
Do you consider your IBD a disability?
I share all this with you for a few reasons. Personally, I have experienced a change in my internal identification as disabled over the last several years. This has made me wonder...
Do you think most IBD patients identify themselves as disabled? Do you consider your IBD a disability? Do you think IBD patients should be classified as disabled? Why or why not?
Comment below to share your thoughts.
Do you keep a food diary to help manage symptoms?