Understanding the employment experiences of people with IBD: A work in progress


By Leslie Cheng

MPH Health Promotion Student, Class of 2021
Dalla Lana School of Public Health, University of Toronto
Millions of people in Canada live with episodic disabilities, which commonly arise from chronic health conditions like arthritis, multiple sclerosis, Crohn’s disease, and ulcerative colitis. Unlike permanent disabilities, episodic disabilities are defined by fluctuating periods of illness and good health, which can vary in length and severity.  
People with episodic disabilities face unique challenges in the workplace due to the unpredictable and often invisible nature of their conditions. Not only can these difficulties affect the ability to work, they can also make it difficult for employees to advocate for the workplace supports they need, and for employers to respond appropriately. A recent study published in the Journal of Occupational Rehabilitation highlighted several issues that commonly arise around workplace disclosure and support for people with episodic disabilities from the perspective of organizations. Some of these challenges include protecting worker privacy when others in the workplace notice symptoms or accommodations, lacking resources to plan for intermittent work disruptions, and addressing situations where work disability is misinterpreted as a work performance issue.
How do people with inflammatory bowel disease (IBD) experience work?
Despite the prevalence of episodic disabilities, there are considerable gaps in our understanding of these conditions in relation to employment. Specifically, we don’t know enough about how people with IBD are impacted by work disability. The team at Crohn’s and Colitis Canada was interested in learning more about how IBD affects work, with the goal of developing resources that will help people navigate the workplace and sustain employment.
In an effort to begin answering some of these questions, I completed a summer practicum with Crohn’s and Colitis Canada focused on exploring the relationship between employment and IBD. As part of this work, I spoke with ten people with Crohn’s disease or ulcerative colitis, who were employed or had been previously employed, about their experiences in the workplace. These individuals represented different communities across Canada and worked in a variety of job sectors, including education, public service, and the arts. They shared insights into common workplace issues, strategies for managing symptoms at work, and important types of workplace supports. Here are the key takeaways that emerged from these conversations:
  1. Challenges in the workplace are common and we don’t know enough about them 
Participants described experiencing challenges in the workplace at various points during their journey with IBD. However, many of the barriers they identified are not captured in currently published scientific literature. We also don’t know enough about how different factors, such as age, gender and disease severity, create different workplace experiences and needs for people with IBD. These gaps in research point to a need for more studies in this area. Studies are important because they generate scientific evidence that researchers and policymakers rely upon. Researchers use evidence to inform the creation of new and innovative resources, while policymakers use evidence to advocate for better workplace policies and programs.
  1. A one-size-fits-all approach to workplace accommodations does not work
Participants stressed that a one-size-fits-all approach doesn’t work when it comes to managing symptoms of IBD. Not only do symptoms differ between people, but they can also change over time and alternate between relapse and remission. As a result, accommodation needs may change over time. Employers must recognize that while an employee may not express the need for an accommodation at one moment, this does not mean that they will not need one in the future. One participant expressed that there is relief in knowing her employer provides her with the flexibility to access accommodation when she needs them.
  1. Co-workers and supervisors can be important sources of support
Most of those who shared their diagnoses at work had positive experiences. Colleagues were empathetic and often had a personal connection to IBD or another chronic condition. Disclosure sometimes helped to facilitate informal accommodations between an employee and their supervisor. For example, one participant was provided with flexible work hours, meaning if he showed up half an hour late to work, he would simply stay half an hour later, no questions asked. He felt less stressed because he could stop to use the washroom along his commute without worrying about being late. However, the decision to share is a personal one and some may prefer to keep this information private. Canadian legislation protects workers from having to disclose their diagnoses in order to receive reasonable accommodations.
  1. Food can impact social interactions in the workplace
Sharing birthday cupcakes or an after-work meal can be a source of connection between colleagues. Several participants spoke about instances where they attended these types of social activities but felt uncomfortable because they were unable to eat the food provided. Declining offers of food sometimes led to invasive questions from colleagues or made them feel pressured to explain that they had IBD. One individual described feeling uncomfortable explaining her condition due to the stigma associated with bowel diseases. While some workplaces were proactive and tried to account for dietary needs, others were less accommodating. Work-related social events are more than just opportunities to mingle; they provide important opportunities for employees to build relationships with each other. Creating an inclusive workplace culture means ensuring that people feel welcome not just in the formal work environment, but in these informal social settings as well.
These individuals identified a number of barriers to work that people with IBD face. However, there is still much that needs to be known to best support sustained employment for people with IBD. For example, we need to learn more about those who have trouble finding or sustaining employment, those who have challenges with extraintestinal symptoms, and those with precarious or unpredictable work.
Crohn’s and Colitis Canada is engaged in a research partnership focused on advancing our understanding of episodic disabilities and providing support for people in the workplace. Spearheaded by scientists from the Institute for Work & Health, the project is called Accommodating and Communicating about Episodic Disabilities (ACED). The ACED team published their first-phase findings and is developing a toolkit to help facilitate communication and accommodation planning between employers and employees. By equipping employers and employees with practical tools and resources, the goal of ACED is to ensure Canadians with episodic disabilities are provided with the support they need to productively remain in the workforce.
This practicum was made possible thanks to the ACED partnership and the support of Dr. Monique Gignac and Dr. Arif Jetha from the Institute for Work & Health. To learn more about the work being conducted through ACED, click here.

  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 140 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

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