Tips for Navigating Chronic Illness in the Workplace

“I like to think of myself as Leslie Knope,” says Channing Barker, a communications professional from Arkansas. They both have blonde hair and incredible passion. A wicked sense of humor, for sure. Plus, Leslie Knope is persistent. Nothing gets her down. 

You could definitely say the same of Barker, whose multiple sclerosis (MS) diagnosis at age 16 hasn’t stopped her from pursuing her career aspirations.

“It’s never been a ‘but’ to anything I was doing in my life,” says Barker of her MS. “It’s been an ‘and.’”

To be sure, working with a serious illness such as MS, cancer, or lupus isn’t easy, especially at the early stages of your career when you’re still building a reputation. But many social-impact professionals like Barker have found ways to deal with chronic illness in the workplace.

“Most of us can’t afford not to work, but the reason we work isn’t necessarily just because of that,” says Rebecca Nellis, executive director of Cancer and Careers, which provides advice, interactive tools, and educational events for people navigating cancer and work.

If you’re dealing with a new diagnosis at work or worried about switching into the social-impact sector with your serious illness, the following tips from Nellis and Barker can help you advance your career while taking care of your health.

Talk to your doctor

Partner up with your doctor to figure out how to best navigate chronic illness while working. You have the best knowledge of your job and its responsibilities and demands, while your doctor has the best knowledge of your diagnosis, possible side effects of your treatment, and what has worked for other patients.

Help your doctor help you by sharing details such as:

• Your work environment. Do you spend most of your day at a desk or on your feet? Do you work in a private office or a cubicle? Do you always work in the office, or can you work from home?
• Who you interact with at work. If your immune system may be compromised by your treatment and you spend a lot of time with children or in other public-facing roles, your doctor may be concerned about your exposure to germs.
• Your schedule. Do you have a predictable eight-hour day, Monday through Friday? Or do you work hourly shifts that can vary each week? Do you travel often to meet with major donors or present at conferences?

You’ll also want to ask your doctor about common symptoms of your condition or reactions to your chosen treatment, ways to manage those symptoms and side effects, and whether you have any flexibility with your treatment or other options that may be less disruptive to your work schedule.

Talking to your doctor is an ongoing conversation, not a one-and-done event, because despite the common symptoms and side effects of certain medications, you can’t completely predict how an illness or medication will affect you.

For Hillah C., a 34-year-old project manager who was diagnosed with Hodgkin Lymphoma in May 2017 and chose to work through her treatment, one unexpected side effect was sensitivity to smell, which made it difficult to work in her cubicle near the kitchen. She’d been with her employer for years and was nervous about requesting a workplace accommodation, but Hillah worked with her manager and team to make sure she was comfortable at the office. At first, Hillah moved to a different cubicle to better manage her smell sensitivity. Eventually, she decided it would be best to work remotely, and her employer helped her secure the proper resources so she could do so comfortably.

Know your legal rights

There are plenty of resources available to help you navigate legal issues surrounding your illness and employment.

The U.S. Department of Labor's Office of Disability Employment Policy runs the Job Accommodation Network (JAN), which provides “free, expert, and confidential guidance on workplace accommodations and disability employment issues.” You can also access resources from disease-specific organizations such as Cancer and Careers, the National MS Society, or the Lupus Foundation of America.

Where you work can affect the legal protections available to you. For example, the Americans with Disabilities Act (ADA), which prohibits discrimination on the basis of disability in employment and other areas, generally applies to employers with 15 or more employees. So, if you work at a smaller nonprofit, you may not be protected under the ADA.

Similarly, the Family and Medical Leave Act (FMLA), which provides up to 12 weeks of unpaid, job-protected leave to address a family or medical issue, applies to employers with 50 or more employees. Other restrictions apply, including a requirement that you’ve been at your job for at least 12 months before taking FMLA leave.

Where you live also matters, as some states have passed their own anti-discrimination laws or family and medical leave laws that apply to smaller employers.

Decide whether and how to tell your employer

Whether and to what extent to disclose your illness has many implications for your career, including legal implications, so be sure to seek professional advice before moving forward.

Beyond the legal issues, there are other reasons why you may be grappling with what to tell your employer.

Steve Nissen, director of MS Navigator Services Delivery at the National Multiple Sclerosis Society, says some people decide to disclose their chronic illness at work so they don’t feel like they’re keeping a secret and don’t have to deal with the stress that can add.

But even if you decide to disclose your condition at work, you still have to wrestle with how much to share, and you have to be prepared for all kinds of reactions—including, says Nellis of Cancer and Careers, the possibility that your boss may not know what to do next.

That’s why Cancer and Careers offers a manager’s toolkit for employees to share when they disclose their diagnosis. The manager’s toolkit contains information on what to expect when an employee has cancer, applicable laws, and ideas for creating a supportive work environment. Another helpful organization is The Center for Chronic Illness, which provides webinars and other resources to help you talk to a manager about chronic illness.

Tell co-workers if you feel comfortable

Telling your coworkers about your illness is up to you. If you decide to tell people at work, Nellis says you should let them know if they can share that information with others or if you’re trying to keep it private besides a small circle of trusted people.

“You can control your story, and you can control what you want to talk about. But in the workplace, of course, you have to do that delicately,” Nellis says.

Barker says she chose to be very open about her experience with MS. In her prior career as a broadcast journalist, she spoke about MS on the air, so disclosing her condition to her boss and co-workers at her new employer wasn’t an issue for her.

Instead of focusing on whether to disclose her chronic illness in the workplace, Barker says she tries to focus more on educating people about how MS can affect her energy level, short-term memory, speaking, and other issues at work.

“My worst fear is for someone to think that I’m being lazy or I’m not able to do my job,” Barker says. That’s why she tries to educate people about MS at the beginning so it’s easier for them to understand what’s happening when her MS affects her at work.

Find the accommodations or adjustments that work for you

Even if you’ve decided to not disclose your illness, you may be able to make adjustments that help you cope. For example, if your organization offers flexible scheduling and telecommuting, you may not need to disclose your illness to take advantage of those options.

In addition, some simple changes can go a long way, such as keeping a fan at your desk if your illness or treatment causes heat sensitivity (which Nissen of the National MS Society says can be a common MS symptom) or using to-do lists and other organizing tools to help minimize any cognitive issues you may be experiencing.

“There’s a lot of really practical things that can be done that don’t cost the employer much money and can be really beneficial to an employee with MS,” Nissen says.

If you have decided to disclose your illness, clearly communicating with your boss about how things are going can help you succeed.

Take care of yourself

Ultimately, your health matters the most—and not just your physical health.

“Mentally, you have to take care of yourself whether you have a disease or not,” Barker says. To keep her mind and body healthy, she always gets a full night of sleep and makes time to exercise and eat well.

If you’re working from home while going through treatment, you may feel disconnected and lonely. To counteract those feelings, Hillah says she would periodically call co-workers with whom she had a good rapport.

Nellis of Cancer and Careers also helps cancer patients and survivors navigate job searching, and she says taking care of yourself in your search is particularly important.

Cancer and job searching are “two highly charged experiences,” with highs and lows, Nellis says. It’s natural to feel like you’re taking three steps forward, two steps back, she adds, and it’s important to take care of yourself so you can tell the best story about yourself as you look for a job.