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.
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.
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.
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.
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. It’s important to anticipate misconceptions about MBC and explain that, as with any chronic illness, treatment is ongoing.
It’s also important to help your manager understand what you need. Ask your employer if they have any questions. Let them know 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. The Americans with Disabilities Act (ADA) and state fair employment laws 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. 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. 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. 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 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. 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.
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. Triage Cancer has resources that can help.
If you find you need a lawyer to help you navigate disability claims, contact Forge’s Client Services Coordinator, Janet Dees, at (205) 990-5367 or [email protected]. She can refer you to a pro bono lawyer at the Bar Association.