Managing metastatic breast cancer (MBC) can feel like a full-time job in itself. But if you — like many people living with MBC — are continuing to work, balancing your new normal and your professional life can be challenging.
Deciding if and how to tell your employer and coworkers about your condition is a personal choice. How you approach it will depend on a variety of factors, such as what accommodations you may need to do your job, what kind of relationship you have with your boss and coworkers already, and how your state handles disability issues.
We asked experts and our Community members who are living with MBC to discuss their experiences sharing (or not) with their workplaces and to give insight on how to approach the situation.
Who needs to know?
Before you speak with anyone at work about your health, determine what you need and whether telling anyone makes sense for you. At the end of the day, it’s your choice.
“You need to be certain about whether you want to tell anyone at work and why you want to do that,” says Roz Kleban, LCSW, senior social work manager at the Breast Center at Memorial Sloan-Kettering Cancer Center in New York. “An important reason to talk to your employer is to ask for reasonable accommodations.”
But before having a conversation with your employer, it’s important to understand your employment rights, according to Joanna Morales, CEO of Triage Cancer, a national nonprofit organization that provides education on the practical and legal issues for people with cancer and their caregivers. “Think through the ramifications of disclosing this to your employer,” she says.
Ask yourself: What are your goals? Do you want to continue to work? If you can’t, understand your ability to take time off from work and how you can use any benefits, such as sick, personal, or vacation time or disability benefits received through an employer, state disability insurance, or federal programs such as Social Security Disability Insurance or Supplemental Security Income. “All of those have different standards of disability and different benefits and ways to qualify,” says Morales.
Some people — such as Breastcancer.org Community member JFL — choose to keep their health status to themselves. “My employer would be very supportive from an emotional and time off standpoint, but sharing the full nature of my stage 4 diagnosis would essentially bring my career to a screeching halt,” she says. “I don't share my diagnosis because I do not want to be written off professionally or personally, taken off of a career path and treated with kid gloves like someone who is dying and beyond all hope. Thus, I remain in the closet about my diagnosis for the most part.”
But others have found sharing the information to be helpful. Community member Shutterbug73 says she had worked at her job for 6 years when she was diagnosed with MBC. “I chose to tell my boss and asked that she tell everyone in my department. I have a very busy job, and I take pride in staying on top of things. I wanted everyone to know why I wasn't at the top of my game. They were wonderful. I used my regular time off to get me through the hard days of chemo. My boss allowed me to work from home and encouraged me to take more breaks … I threw myself into work as much as I could. It gave me a sense of normalcy, and it was the first place that I would forget about cancer.”
As you consider who to tell at work, if anyone, research your options. Cancer+Careers provides expert advice on how to have these conversations in the workplace, including how to talk to your manager. “I wouldn’t do anything having to do with work without reaching out” to this website first, says Kleban.
How to have the conversation
Most people outside the medical community probably aren’t familiar with MBC and may not understand that it is a chronic illness that requires regular care or that some people with MBC can continue to work with minor changes, says Kleban.
“There are people who talk about MBC as a terminal illness, but that is not how you want to talk to your employer,” she says.
Rather, it’s important to anticipate misconceptions about MBC and explain that, as with any chronic illness, treatment is ongoing.
“You can tell a friend or an employer about MBC, and that person will say, 6 months later, ‘When are you going to be finished with your treatment?’” says Kleban. “The answer is, ‘Hopefully, I will never be finished. It’s a chronic illness that needs continued attention and medical direction.’”
It’s also important to help your manager understand what you need, says Morales. “Ask your employer if they have any questions,” she says. “The thing you want to leave them with is that you are capable and can do the job with or without reasonable accommodations.”
When you know what you need for accommodations, understand your rights under both federal and state law and know your employer’s policies. That way, you can come up with a plan even before you talk to anyone, suggests Morales.
“Understand how to match your rights with your goals,” she says. “There is the Americans with Disabilities Act (ADA) and state fair employment laws that protect you from discrimination in the workplace and give access to reasonable accommodations, like flexible schedules, more rest periods, or technology that might help you continue to work.”
How to protect your privacy
Choosing to share your health information is a personal decision, and you’ll have to decide what’s right for you.
“Some people don’t have qualms at all, but we do know that discrimination exists,” says Morales. “Claims are filed all the time, but we think it’s underreported. When it comes to employment discrimination, it’s a difficult path for people to pursue legally, because they have to prove discrimination.”
Because of these concerns, it’s important to know you have choices about your privacy and that you can make conscious decisions about the information you disclose.
“Generally, disclosure of a medical condition isn’t required unless someone wants access to legal protections, such as accommodations under the ADA or medical leave,” says Morales. “You need to share enough information about a medical condition to show you are eligible, but you don’t need to specify a cancer or a metastatic cancer diagnosis.”
Instead, reporting your treatment-related side effects may be sufficient to qualify for these protections.
“Most of the time, medical leave isn’t for the cancer diagnosis, but for a side effect from treatment,” says Morales. “Side effects are often medical conditions on their own. This can be talked about on certification forms without ever tying the leave back to a cancer diagnosis. This can provide a bit of cover for privacy.”
Triage Cancer offers “Quick Guide to Disclosure, Privacy, & Medical Certification Forms” (PDF), which gives additional guidance on how to ensure that healthcare providers maintain the level of privacy you want when preparing forms that employers will see, as well as other related information.
How to ask for accommodations and what you are entitled to
It’s important to know what accommodations you can ask for at work and how the ADA can help.
“With respect to accessibility, first think about what is posing a challenge for you at work,” says Morales. “And then think about what your job responsibilities are, and what are the types of accommodations that could actually help you address those challenges.”
The ADA is written broadly, and Morales urges people to think broadly, too.
“Come up with a list of things that could be helpful, such as a potential challenge and a list of several solutions — this is more proactive,” she says. That way, if an employer says that, for example, the employee cannot telecommute but could work with an adjusted schedule instead, it shows that the employee is thinking through the possibilities rather than just presenting a problem.
“The employer just wants to get the work done. If there is a potential problem, having the employee present several possible solutions shows a good-faith effort that the employee wants to be part of the solution,” Morales says.
The Job Accommodation Network has information about how to ask for the accommodations you need, which can cover issues such as telecommuting and scheduling as well as changes in office furniture and equipment, for example.
Some people are lucky that their employers are accommodating and eager to help. As Breastcancer.org Community member pajim says, “The ethos where I work is, ‘We'll support you to the end.’ And I've seen them do it for two others. They will do it for me. In exchange, I'm as honest with my direct boss and the head of HR as possible. For instance, I told them both last year that I was on the last treatment before IV chemo and I expect that IV chemo will interfere in my ability to do my job. Their response was, ‘What do you need?’ I realize I am luckier than I can imagine.”
Unfortunately, others sometimes face challenges with obtaining reasonable accommodations at work, such as Community member Lumpie.
“I work for a large healthcare organization,” she says. “Unfortunately, they have not been particularly supportive.”
Even though Lumpie scheduled her surgeries and doctor’s appointments on days adjacent to weekends to minimize time off, she says she was reclassified as part time even though she was working full time. “This reduced my access to benefits, although I was able to keep health insurance which has been critical,” she wrote.
Her boss and coworkers sometimes seemed frustrated that she “was slightly tired and may not have felt 100%,” she added. “It was made very clear that this was unacceptable.”
She also says she was denied pay rate increases awarded to other staff. “I was told explicitly that it was because I was less valuable since I was treated for cancer and did not deserve the increase awarded to all other staff members,” she wrote. “When I needed more treatment, I was told that my department had done enough for me and that I had 30 days to find a new job.”
How to handle it if your workplace is unaccommodating
If you request reasonable accommodations and find that your employer and colleagues are less than supportive, it’s important to know your rights.
“If an employee is eligible for protection under the ADA or state fair employment law, the only excuse for an employer to deny accommodations is if it poses an undue burden for the employer, or a direct threat to the employee or others,” says Morales. “It is supposed to be an interactive process and a negotiation as to what accommodations get chosen, implemented, and monitored.”
But if you are told that none of your requests for accommodations can be provided, it may be time to find an attorney. “It’s a legal issue,” says Kleban. “If they are unaccommodating, the patient needs to see if they are protected under the law.”
If you feel you need to seek legal assistance to deal with an unaccommodating workplace, Triage Cancer has resources that can help, Morales says.
If you are living with MBC and are continuing to work, join the conversation with others who share your experience in the Breastcancer.org Community.
Written by: Cheryl Alkon, contributing writer
This content was made possible by Lilly Oncology.