The Work-Cancer Balance
Thompson says she kept her employer informed as her diagnoses unfolded, and that her supervisor and co-workers were supportive. She used four weeks of paid time off during treatment, but didn’t take any time off through the Family and Medical Leave Act (FMLA), which allows eligible employees to take unpaid, job-protected leave. Looking back, she says she would have taken more time to care for herself and deal with the emotions she felt. For example, she wasn’t prepared for the depression that persisted for almost two years after her treatment and on some days prevented her from leaving her bedroom. To cope with her depression, she saw a counselor and shared her story with others as a way to help them. In 2013, Thompson, who still struggles with her autoimmune disorder, changed jobs to make a fresh start.
Experts say patients need to understand their employment rights and company policies before deciding whether to continue working during cancer treatment. | Photo © Rawpixel Ltd / istock / thinkstock
“I only left because I wanted to feel in charge,” she says. “I wanted to come with my plan on the table and have them accept me rather than feel accommodated.”
Know Your Rights
Joanna Morales is a cancer rights attorney and CEO of Triage Cancer, a nonprofit organization based in Culver City, California, that focuses on connecting survivors, caregivers and health care professionals to information and resources on cancer survivorship. She says patients need to understand their employment rights and company policies before deciding whether to continue working.
“Then you can start to figure out if working through treatment is something you’re actually able to do, based on your rights, your specific job responsibilities and your health,” she says.
Legal protections can help people who keep working, she says. The Americans with Disabilities Act (ADA) applies to private-sector employers with 15 or more employees and also protects public-sector employees. The legislation prohibits discrimination in the workplace against qualified employees with disabilities and forbids employers from discriminating when making decisions about hiring, firing, benefits and promotions. The ADA also requires employers to make reasonable accommodations—which could include a change in work hours or company policies—for people with disabilities. Though the act has been in force for 25 years, Morales says, many people, including employers, are unaware of its provisions.
For example, she says, a patient who has neuropathy in the fingers from chemotherapy and types at work can request speech recognition software. A patient who needs mornings off for doctor appointments can ask to work a later shift. A cashier who is too tired to stand could ask for a stool. The act requires that employers provide accommodations to eligible staff members, Morales says, but the accommodation doesn’t have to be exactly what the employee requests as long as it is effective. Employers can reject a request if it poses an undue hardship on the company.
Morales says patients also should learn about their state’s fair employment laws, which might offer more protection than the ADA. For example, state laws comparable to the ADA in California and New York apply to companies that have at least five and four employees, respectively.
Some patients also can use the FMLA to keep their jobs through cancer treatment. The act, which applies to private-sector employers of 50 or more employees and includes public-sector employees, allows workers to take as many as 12 weeks of unpaid leave per year while securing their job and health insurance. Morales says many people don’t realize they can take FMLA in segments—for a week or even a day at a time—rather than all at once.
Morales says patients should understand their employer’s policies and benefits, including paid time off and health, dental, vision and life insurance. And if an employer isn’t bound by law to provide an accommodation or time off, the employee should consider asking for it.
“The worst-case scenario is they’ll say no,” Morales says.
A Difficult Subject
Many patients are unsure how to broach the subject of their cancer diagnosis with their employer, or even whether they should. The ADA doesn’t require patients to disclose their diagnosis, Morales says, only treatment side effects—such as concentration and memory problems—that may warrant an accommodation.
“There’s a lot of fear,” Nellis says about informing an employer. “Fear of not being supported, fear of being dismissed from their role, fear of being supported but being seen differently so that they miss out on opportunities for professional growth or advancement.”
In deciding who to tell about a diagnosis and how much to share, she says, patients should consider what accommodations or other legal protections they might need, whether they are open or private people, and what their workplace is like. They should talk to their health care team about a treatment timeline and possible side effects that might affect their ability to do their job.
When talking to a supervisor or human resources manager about cancer, Nellis recommends that an employee describe why it’s important to continue working. The employee should relate what he or she knows about the treatment course at that time, and alert the employer that things could change later. She says it becomes difficult when employees present a best-case scenario and treatment doesn’t go as planned.
“We like to encourage people to adopt a language of fluidity,” Nellis says, such as, “ ‘This is what I know right now, and I’d like to be able to keep you looped in so that we can work together throughout.’ ”
Pressure to Perform
When Dan Adams, 63, of Linwood, New Jersey, was diagnosed with early-stage bladder cancer in 2008, he initially told only his supervisor. He shared his diagnosis with co-workers after returning from a week off to have surgery.
Adams, who at the time worked in billing for a utility company, says the tiredness he felt because of his immunotherapy treatments didn’t prevent him from doing his job. He traveled 60 miles from his New Jersey home to Penn Medicine in Philadelphia once a week for treatment with bacillus Calmette-Guérin, a vaccine administered on an outpatient basis. Initially, he wasn’t concerned that his diagnosis would affect his employment.
But when he started to feel slightly irritable and distracted by an underlying sense of panic and, on one occasion, incorrectly billed 10,000 customers, he knew something was off. After that, he made a point to be more mindful on the job and often asked colleagues to double-check his work. He had a long conversation with his family doctor, who prescribed Lexapro (escitalopram) to treat his anxiety. Adams continued to participate in an online bladder cancer community that helped him with the anxiety, and he also discussed it with his supervisor.
“She said she understood it, but I don’t really think she did,” he says. “I believe she thought my anxiety was an issue I couldn’t overcome.”
In 2011, Adams and his wife, Mary Ann, decided to start spending more time together, so he started a new job that was closer to home and offered better health benefits. He also felt that since his billing error, his supervisor had lacked confidence in him.
“I don’t think I ever really recovered the relationship I had with my prior boss,” says Adams, who now supervises a team of program monitors for Atlantic County in New Jersey. “That in and of itself made it easier to move along.”
Working With Your Providers
When Cancer and Careers was founded in 2001, Nellis says, a commonly held view was that people being treated for cancer would stop working.
“It has become much more apparent that the goal should be to help a person do what makes sense for them,” she says.
As more people stay on the job through treatment, Nellis says, work has become a topic for patients and their oncology teams to discuss. She says health care providers need to be aware of the issues cancer patients face in the workplace so they can offer informed counsel. Cancer and Careers offers training on work-related issues for health care professionals.
Morales says if patients don’t understand their rights and don’t talk to their doctors about their desire to work, they might assume they can’t work and decide to take a leave of absence or quit their job. Later, they might regret the decision.
“People have choices, and they can make educated choices if they have all of the information to do that,” Morales says.
LEIGH LABRIE is the associate editor of Cancer Today.