The workplace can present a Catch-22 for someone with a rare or chronic disease. The employee can keep it to themselves, retaining their privacy but also missing a chance to request accommodations that can better set them up for success.
Disclosure can be done in a way that preserves the employee’s medical privacy, experts said. And getting a condition out in the open can open the door to a discussion on accommodations that could ease the employee’s career path and enable long-term employment.
Christian Adams, co-founder of the online hub Coffee Affection, says it’s good business to tailor working conditions to an employee’s needs because it helps companies retain great workers. Communication is key to working out an arrangement, said Adams. He urges employees to be as open as their comfort level allows.
“If you don't say anything to your employer, it's impossible for them to know that they need to work with you to make sure you're taken care of,” Adams said.
He suggests starting with a chat with a representative in the human relations department, who can work with the appropriate people in the organization to make accommodations. That could be anything from flexible hours to an accessible office to working remotely.
Disabled people looking for work are more likely to be unemployed, according to the U.S. Labor Bureau. But the Americans With Disabilities Act (ADA) offers some protection from discrimination. Workers have the right to ask for reasonable accommodations though the ADA applies only to companies with 15 or more workers.
“We allow one of our employees to have a more flexible schedule as long as they get their work done,” Adams said. “Their condition requires frequent testing and doctor's visits, so they can't be present during working hours all the time. Their work is great, so we don't mind that it sometimes happens later in the evening or very early in the morning.”
Ouriel Lemmel is the CEO of WinIt, an app that helps drivers dispute parking tickets. He employs several workers who have with chronic illnesses and says they are valued members of the team. One employee whose illness causes frequent pain usually works from home, where it’s easier to maintain some level of comfort.
“The pain meant that they sometimes had to work odd hours, basically whenever they weren't in pain,” he said. “This isn't too difficult to accommodate as we are a primarily remote company.”
Accommodations include allowing the employee to turn off the Zoom camera when they’re not feeling well.
“I check in from time to time and make sure that we are doing everything we can to make them comfortable,” he said.
In a small business, Lemmel suggests setting up a one-on-one meeting to discuss accommodations for chronic illness.
“Assume that your boss knows little about your rare illness. Your boss may not know where to start so give them a head start by laying out your needs. Make sure they understand how serious this is for you,” he said.
But don’t feel compelled to share more than you want to about your health, immunodeficiency patient Lisa Massey said at a recent webinar on rare disease and employment. You can ask your doctor to provide a letter about your needs while still maintaining your privacy, said Massey, a program specialist with the Association of Medical Colleges.
You can share just enough to manage your working conditions, agreed business owner Adams.
“Because of the sensitive nature of rare diseases, it's okay if you aren't comfortable sharing 100% of the details surrounding it,” he said.
If you take time off due to illness, make sure there is a tailored plan in place for you when you return, said Davina Tiwari, a medical social worker in Toronto. Turn to your doctor to provide paperwork about your needs and give your employer a return date so the business can manage while you’re out, she said.
“Establishing a return-to-work plan with your occupational health/human resources department is important based on the intensity of work, assignment of duties, and amount of work hours you and your doctor believe are realistic based on your unique needs,” she said.
CSL Behring explains its policies on equal opportunity and inclusion here.
