Barriers in education and at work disadvantage people with inflammatory bowel disease

Lived experience of work and education with IBD

To successfully support employees with IBD, it is critical for employers to engage with the challenges of the disorder and make individually tailored accommodations. Too often, however, this doesn’t happen. People living with IBD have described quitting a job or being let go by their employer because suitable accommodations were not offered. This lack of understanding from employers and the failure to treat the issue seriously can often intersect with the feelings many people with IBD experience about their illness, such as embarrassment and anxiety. These feelings can lead to difficulties speaking openly with supervisors about the condition.

Worryingly, similar challenges are also present in the education sector. A cross-sectional survey in Germany found that over 60% of children with IBD had not disclosed the full details of their condition to their school. In addition, 57% of parents felt that their child’s time at school had been compromised because of IBD. It is important for educators to create open and supportive environments for students with IBD to minimise the disruption to their learning; without this, there could be long-term implications for their career prospects and overall income potential.

The economic benefits of change

Improving conditions for people with IBD is in everyone’s interests – from governments to companies to individuals. The economic burden of IBD is significant. In the US alone, experts estimated that the costs of IBD may have reached nearly $32 billion in 2014. While estimates range widely, indirect costs are known to account for a significant proportion of the financial burden of IBD. These costs are associated with loss of productivity, absenteeism and presenteeism, which negatively affect individuals, businesses and society. To reverse this trend, governments and companies should be acting to unlock the potential of people with IBD in the workforce.

Removing barriers in school and the workplace

Each person’s experience with IBD is unique, and so are their needs. However, schools and employers can be proactive in putting in place policies that allow people to reach their full potential, benefiting both the individuals affected and their organisations. Key areas that can help overcome barriers are:

• access to toilet facilities
• dietary considerations in line with a person’s needs
• understanding that time off work may be needed during acute flare-ups
• flexible working hours and location
• a knowledgeable, inclusive and supportive environment
• educational support for missed school, university or training
• mental health and wellbeing provisions.

As we transition into a new age of working and studying in light of lessons learnt during the COVID-19 pandemic, now is the time to raise awareness of the challenges people with IBD face in the workplace and in education. The pandemic has taught us that we can work and study flexibly, and this knowledge should serve as a catalyst to improve conditions for those living with IBD and other chronic conditions.

To read about how people with IBD were affected by the COVID-19 pandemic, please see this 2021 blog by Aditi Karnad.

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.