Is Your Employer Meeting Your Needs? Many Young Adults with Rheumatic Disease Say No

For people with moderate to severe rheumatic disease, symptoms including pain and fatigue often interfere with daily functioning — including in the workplace. If you’re a young adult who’s just launching your career, deciding whether to tell your boss about your condition can be complicated. Does disclosing this information lead to better workplace support and accommodations? Or can it backfire and harm your career trajectory?  

The answers aren’t clear-cut, but a new study suggests that young adults with rheumatic disease often feel that their workplace support needs are not being fully met, even when they share details about their condition with a supervisor. In general, those who were in worse health were the ones more apt to disclose their health information. 

The study, which was published in Arthritis Care & Research, focused on Canadian rheumatic disease patients between the ages of 18 and 35. Researchers surveyed more than 300 of them to learn about how telling a supervisor about a rheumatic disease might impact the level of workplace support. They also wanted to learn about how it might influence “presenteeism” — showing up for work but not being productive.  

The survey revealed that nearly 70 percent of young adults told their immediate supervisor about having a rheumatic disease. People who disclosed their condition tended to have higher pain, fatigue, and disease activity scores compared to those who did not share this information with their employer.  

The survey measured presenteeism by asking respondents how often their health impacted their productivity at work during the prior week. The researchers found that presenteeism was high, especially when workplace support needs were not met.  

Presenteeism is a problem because it indicates a lack of productivity. When support for workplace needs were high — meaning the employer was even more supportive/helpful than expected — presenteeism was lower (productivity was higher).  

The most wished-for workplace support needs included:

• A flexible work schedule
• Prescription drug coverage
• Extended health benefits
• Paid sick leave
• Modified job duties
• Ergonomic/accessible workstation

Overall, more than half of all participants said that their workplace support needs were unmet. However, this study found that requests for accessible equipment/tools were usually met.  

“Encouraging productive employment at the early career phase can play an important role in enhancing work and health outcomes across the life course,” the researchers explained, adding that “our findings provide evidence that young workers with rheumatic disease may start their career in work environments where supports are less accessible.” 

They also noted, however, that employers can’t provide extra support if they don’t know about an employee’s health situation. “Indeed, employers who offer diverse job accommodations, modifications, and health benefits provide a more supportive work environment and play an important role in ensuring that young workers with rheumatic disease are able to sustain productivity. However, the benefits of workplace support may only be accessed by those who communicate their needs.”  

What This Means for You

Work environment is a huge factor to consider for people living with rheumatic disease, or any type of chronic illness. If your employer is generally open and supportive, don’t hesitate to discuss what you need to thrive at work.  

Want to Get More Involved with Patient Advocacy? 

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspectives and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.