Navigating life with inflammatory bowel disease can be challenging at times, especially when at school or work. In these situations, it may be hard to break away from required activities or responsibilities to handle IBD symptoms. Additionally, in these environments, managing IBD symptoms may be especially embarrassing, and could even be detrimental to your academic or work performance. Learning to navigate your school or work life with IBD can be overwhelming at times, but it is possible. Whether you’re advocating for yourself or for a loved one, here are several things to keep in mind that may be helpful during this ongoing journey.
Communication is key
One of the first steps to successfully navigating your school or work life with IBD (or advocating for a loved one with IBD, such as a child) is communicating your needs to specific individuals. However much you choose to share, and to whom, is completely up to you or the loved one you’re supporting. You do not have to tell everyone what’s going on, however, it may be beneficial to loop in key people, including teachers, professors, advisors, or counselors at school, and supervisors or human resources representatives at work. Not all of the individuals within each group will need to be notified, but they are good places to start when beginning this journey.
No matter whom you choose to tell, who needs to get involved, and how much detail you choose to share, it’s important to remember that your story and experiences are yours to tell in whatever manner you feel best. What’s most critical is that you explain to this person, or people, what you’re going through, and how they can best support you. Whether you’re struggling with having to travel a far distance from your desk to get to the bathroom or need more time on assignments or tests due to regular bathroom breaks, let your listener know what you need. If they are not being receptive to your story, or make you feel uncomfortable, it may be a good idea to find a new advocate. Laws like the Americans with Disabilities Act (ADA) are in place to protect individuals with disabilities (which include mental or physical impairments, like IBD and its symptoms) and to ensure they receive equal and fair treatment in school and the workplace.1 The advocates you choose to confide in should be aware of protections like these, and work with you to help create a positive environment, for you or your loved one.
Managing IBD at school
At school, a 504 plan, or other similar individualized learning plan, can often be requested for a student with IBD. Some aspects of this plan may entitle the student to longer time allotments on tests, or the ability to “stop the clock” on standardized tests (including the SAT and ACT) to accommodate for bathroom breaks. Other accommodations may include assigning the student a desk by the door or closest to the restroom, excusing the student from physical education classes or other activities during a disease flare-up, giving the student the ability to keep water or snacks in the classroom at all times, or even allowing adjustments to the class schedule or attendance requirements (such as allowing the student to arrive late or leave early, or allowing a student more time-off from school to go to doctor’s appointments). Many of these accommodations can follow a student throughout their entire academic career, and can be modified as needed.2
Managing IBD at work
As mentioned before, whom you choose to tell about your IBD and any difficulties in symptoms management is up to you and you may not feel comfortable talking with your boss or other co-workers about the issue. Many individuals will choose to talk with their human resources representative rather than the people they work with every day, which can be a great option. Most organizations have a human resources department, staffed with individuals who are trained to provide support in situations like this. Many may already know legal information such as your ADA rights, and may have suggestions or plans that have been pre-approved by your organization for this kind of situation. The employee handbook may also give details on the processes already in place at your work.
Common workplace accommodations for IBD can sometimes be similar to those for school, depending on the nature of your job. Some of these may include, allowing extra time for breaks (specifically bathroom breaks), assigning an individual a desk or workspace near the restroom, and allowing an individual to modify their schedule (including potentially allowing them to work from home occasionally or adjusting their working hours to avoid driving during rush hour). Additional accommodations may include allowing an individual more time on assignments to make time for symptom management during the day, or allowing an individual with IBD more sick time in order to make doctor’s appointments or to be able take time off during a flare.3
These are not all of the possible accommodations and tips for navigating school and work with IBD. If, or when, you confide in an advocate at school or work about your IBD and need for assistance, you may discover that they already have detailed plans in place for how to best help and support you. If not, you may be able to help lead the way into creating plans like these for yourself and others who may come after you. In such a case, it is important to be prepared and to know your rights in helping put a new system into place. If you find the individual you have spoken with is not helping, you should then move on to a senior manager. If ultimately your school or workplace is unwilling to accommodate you, or discriminates against you once you disclose your IBD, it may be appropriate to file an ADA complaint with the United States Department of Justice.4 Speaking with a discrimination lawyer can help you further understand your rights and what options are available.
Facts About the Americans with Disabilities Act. U.S. Equal Employment Opportunity Commission. https://www.eeoc.gov/eeoc/publications/fs-ada.cfm. Accessed January 27, 2018.
Wachs T. Eight Tips for Heading Back to School after a Crohn’s or Ulcerative Colitis Diagnosis. Seattle Children’s Hospital. http://pulse.seattlechildrens.org/eight-tips-for-heading-back-to-school-after-a-crohns-or-ulcerative-colitis-diagnosis/?doing_wp_cron=1517767607.4962239265441894531250. Published September 5, 2013. Accessed January 27, 2018.
Fact Sheet: Employment and Inflammatory Bowel Disease. Crohn’s and Colitis Foundation. http://www.crohnscolitisfoundation.org/assets/pdfs/employment-and-inflammatory.pdf. Published July 2015. Accessed January 27, 2018.
How to File an ADA Complaint with the U.S. Department of Justice. ADA.gov. https://www.ada.gov/filing_complaint.htm. Accessed January 27, 2018.