Unseen struggles: recognizing invisible illnesses at work
Nearly 80% of workers with invisible illnesses don’t disclose it to their employer out of fear it will change perceptions of them, but it’s a huge part of their daily life and they may need some accommodations to do their best at their jobs.
Some employers are trying to better support staff through their disability inclusion initiatives as they work to create cultures better allowing staff to bring their whole, authentic selves to work, but more needs to be done, workplace experts say.
“We need to kind of move beyond a compliance approach to caring for employees with any type of invisible disability or illness and into a more proactive, consultative approach to inclusion,” said CV Viverito, director analyst for diversity, equity, and inclusion in Gartner’s HR Practice.
Molly Johnson-Jones, CEO of Flexa, a remote job search platform, has an autoimmune condition that causes her hands, feet and face to swell up. When she started her career in investment banking in 2017 she experienced episodes weekly and frequently used sick days until asking to work from home once a week.
Her request was approved though she was fired shortly after, she said. She believes the conversation hasn’t shifted nearly enough. “The issue is that people can’t see them,” she said. But creating more inclusive cultures holistically where people feel psychologically safe is necessary and what more staff are expecting from their employers today.
Invisible illnesses include physical chronic health conditions like epilepsy, Crohn’s disease and diabetes, to name a few, and also chronic mental health conditions like depression and anxiety. Employers are legally obligated to make reasonable accommodations, but because they’re invisible, disclosure is often the hardest part — though an important piece in making staff feel safe at work.
Not disclosing leads to covering, or feeling the need to tone down or hide certain aspects of oneself, Viverito said. “Covering causes disengagement of a person’s innovation, creativity, it lowers morale, decreases feelings of psychological safety, it is not a good thing for the workplace,” they said.
As part of wider inclusion initiatives, employers can incorporate programs to encourage and enable self-disclosure, but they need to rely on several key tenants to work successfully. To start, self-disclosure is a process, and may begin with telling a colleague or maybe a manager before bringing it to HR. Trust building is also essential.
Staff may not feel comfortable disclosing an invisible illness even on anonymous surveys, so before administering those as part of wider inclusion initiatives, they need to know exactly why it’s being collected and what will happen with the data. “The top factor in deciding whether or not to share personal data is if the employer clearly explains how the data is collected, used, and the benefits it will achieve,” they said. That data can help give HR a better idea of their employee population and whether new benefits or other changes are needed, they said.
Successful self-disclosure campaigns often include an employee spotlight, where an employee with an invisible illness tells their story, how and why they disclosed it and the difference it’s made. “Having that visible person that is a colleague, that is a peer saying, ‘Yes, I have this condition and I’m super proud to work here,’ tends to work really well as a powerful communications campaign and can make a difference.”
But truly making workplaces more inclusive means everyone needs to get on board. “A little bit of stakeholder mapping is a really useful tool for HR leaders to just get started and start taking the next steps but they don’t feel overwhelmed with what to do and how to do it,” they said.
Other ways to better support workers with invisible illnesses is by continuing to offer more flexible working arrangements. Those policies are inherently inclusive and can benefit other populations, like working mothers, and others.
“Being able to work from home or take those additional sick days, that actually could be the difference between an autoimmune patient being able to stay in the workforce or not,” said Ellen Rudolph, CEO and co-founder of Welltheory, a virtual healthcare platform that helps employees with autoimmune disorders navigate the healthcare system.
Rudolph has an autoimmune condition which she shared in a TikTok video garnering hundreds of thousands of likes and comments from others relating to her story. “They often fly under the radar because you don’t really need to look sick to be sick. And so I think it’s a really important topic that we just are shedding more light on, especially in the workplace,” she said.
She thinks younger generations are helping demystify these chronic conditions through their openness sharing online, and ongoing generational shift could help increase awareness and reduce stigma. “It’s a great starting point,” she said.