A child of the deep south, I heard my mother say more than once that sex, politics and religion were topics to avoid in conversation. I wonder what she would have thought about a diagnosis of ‘the big C’?
The life-changing conversation is the one between you and your doctor: when she tells you that you have breast cancer. For me, that came in an overdue phone call while I was on the commuter train headed home from work. The call was overdue because I had expected it on Friday, and it was now Monday.
Dr. J was her straightforward self, telling me that she knew I’d want to know as soon as she did, and that there were details she had yet to know. I was, on one hand, in shock. On the other, I told myself that I had been screened twice a year forever (it felt like) and it was probably caught early. (It wasn’t, but it would be two months before I’d know that.)
Family and friends: who do you tell, how do you tell them, when do you tell them? There is no right or wrong answer, it’s a “what feels right to you” answer.
If you are hesitant, as I was, in part because I didn’t want people to feel sorry for me or to feel like I was looking for sympathy, remember that the people who care about you want to know. They want to help.
And face it, you’re going to need help if your diagnosis involves more than a single surgery. Friends and family can
- drive you to appointments
- take notes at doctor’s appointments
- keep you company during long treatment sessions
- run errands
- cook meals
- walk the dog
- serve as a sounding board
- be an advocate with your care team
- take your children to school
- help with yard work, groceries, washing clothes
For many of us, asking for help is not easy. As my friend Litsa Dremousis wrote in the Washington Post:
It requires swallowing my pride, acknowledging my body is fallible, and asking directly.
For me, pride has been a stickler.
And then there’s work.
The vulnerability associated with a cancer diagnosis is intense enough that you may shrink from telling coworkers and instead reach for a mask of invincibility.
On the other hand, you may simply not want to cry at work. (That was my excuse to myself, initially.)
But you do need to talk to your HR department if you work for an organization covered by The Family and Medical Leave Act (FMLA).
Signed by President Bill Clinton in 1993, FMLA requires employers with more than 50 employees to allow employees up to 12 weeks (60 work days or 480 work hours) of leave without pay during any 12-month period without losing job or health insurance.
Employees can take this time off as a lump or intermittently, which is an aid to cancer patients undergoing treatment. You can also ask to work a reduced schedule.
Even if you are taking leave without pay, your employer is required to provide your health insurance coverage as though you were still working.
In most cases, the act also requires employers to reinstate you to your job — or an equivalent one — upon your return to work.
Whether or not your tell your coworkers, do talk to HR if you work for a company covered by FMLA.
In addition to FMLA, learn about the Americans With Disabilities Act (1990). People who currently have cancer, or have cancer that is in remission, are covered by parts one and two in the law’s definitions.
Also, the Genetic Information Nondiscrimination Act (2008) ensures that information related to your genetics, such as cancer-related genetic mutations, cannot be used by insurers or employers change your health coverage, job or work duties.
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We often associate wearing a mask with hiding. But with the right frame, a mask can be empowering. From a story by Paul Magrs about an autistic child and David Bowie:
He said: ‘This is an invisible mask, you see?… Then he told me: I always feel afraid, just the same as you. But I wear this mask every single day. And it doesn’t take the fear away, but it makes it feel a bit better. I feel brave enough then to face the whole world and all the people. And now you will, too.
There are days when we could all use that mask of courage.
Should we slip it on, however, remember that we don’t have to face breast cancer alone.
Addendum
I do not have children and would not profess to advise parents. Here are some good resources for telling children about cancer:
- How to talk to children about a breast cancer diagnosis, a first-person account from Hollye Harrington Jacobs at HuffPo
- Telling Kids About Cancer
- Telling your child you have breast cancer from the American Cancer Society
- Tips for talking to children about cancer from the Leukemia and Lymphoma Society
Wow, wow and more wow.
Your comprehensive look at sharing the diagnosis is compelling reading. I still can’t imagine that gut punch coming letting you know that any semblance of control you thought you had over your life can vanish in an instant with a cancer diagnosis.
The rest is stepping up and doing what needs to be done – understanding that life – and your view of it – will never be the same again.
Good, practical information for people in this, too.
Thanks, Kevin. The “telling” was really hard for me, as I know it has been from others (by reading their stories). But “telling” is how you learn that you aren’t alone — women I’ve known for years but didn’t know that they had had breast cancer, for example. My half-sister hadn’t told me that she was diagnosed with Stage 1 breast cancer three years ago. (I wanted to shake her, for selfish reasons, but I doubt I told her I’d been diagnosed as high risk in 2011.)
At work, I “told” my team but not everyone in the office. That came when I gave HR permission to tell employees because we have a program where employees can donate leave time to another employee. The generosity of my coworkers enabled me to take time off for the mastectomy without eating up all my leave, which took a hit in the first half of the year because of Mike’s illness. (I also got fussed at by several coworkers for not letting them know sooner.)
This is not a sorority that you want to belong to. But the women in it … they are incredibly generous.