When I began law school, I imagined a career rooted in service, perhaps serving as legal counsel at a children’s welfare organization or some other perch befitting my lofty ideals. Briefcase in hand, I was ready to engage in tikkun olam. But the reality of student loans reshaped my choices. I joined a New York City law firm and chose a narrow specialty: employee benefits, focusing on the human consequences of systems built around dollars.

But two experiences reoriented my career trajectory toward women’s health advocacy, specifically advising women on how to navigate an often-bewildering medical system.

The first came in 1997. I was living in Silicon Valley with my husband and young daughter, working as a consultant, when my mother—who then lived on Long Island, N.Y.—was diagnosed with breast cancer. I went to New York to support her and ended up staying with her through her mastectomy surgery and some of her chemotherapy treatments.

I had assumed that my role would be to run interference—accepting care packages from friends and family and making sure she wasn’t overwhelmed by visitors. Instead, I found myself immersed in the logistics of her care. My mother struggled to get second opinions and weigh her options. She was sometimes uncertain about insurance coverage and rattled by the barrage of bills and paperwork.

And this was with advantages many patients don’t have: insurance through my father’s law firm, and my father himself—a lawyer and seasoned advocate—at her side. Even with our help, the process was exhausting and confusing. The cancer was found in one breast, and one oncologist urged an aggressive approach, a double mastectomy and chemotherapy; another suggested that since the cancer had only spread to a single lymph node, she would not require such aggressive treatment.

In the end, my mom decided on a single mastectomy and chemotherapy. The range of opinions had left us trying to interpret what this meant for her future. I couldn’t stop thinking: If it felt this overwhelming for my mother, what must it be like for women without her resources?

I knew I could be of help to such women. When I returned to California, I reached out to the Community Breast Health Project (now Bay Area Cancer Connections) and began supporting women with a breast cancer diagnosis trying to navigate work, insurance and care. That volunteer work was a natural extension of my legal training—and it has morphed into the longest and proudest professional commitment of my life.

The second event happened a little while later, several months after my mother finished chemotherapy. My daughter and I were visiting my parents when my mother’s Uncle Bernie died. After the funeral, we helped clean out his Lower East Side apartment.

My mother and I sifted through his bookshelves—silver dollars, a pocket watch, prayer books and piles of papers. On top of one stack, I was surprised to find a death certificate for a 6-year-old child named Goldie Silinsky. She had the same surname as Bernie.

Beneath the yellowed paper was an article on thin newsprint. Two sisters, Rose and Goldie Silinksy, 11 and 6, had been struck by a milk truck while crossing the Williamsburg Bridge. Goldie was killed instantly. Rose, my grandmother, sustained injuries and was hospitalized in Brooklyn.

“Mom, did you know?” I asked her.

“No. They didn’t talk about unpleasant things in front of us kids. Especially after the war.”

Standing in that apartment, thinking that my grandmother had not spoken about the death of her sister, I realized how much harm silence can do. Silence does not protect women. Advocacy does. Knowledge and support do. My mother’s cancer, my grandmother’s childhood trauma and my own professional path led me to the same conclusion—women need the tools and language to demand more from a medical system that often asks them to endure suffering quietly or questions their experiences.

Indeed, according to multiple reports, including a 2021 article shared by the American Cancer Society, women with a higher-than-average risk of breast cancer—including those with a BRCA mutation or a strong family history of the disease—face barriers to preventive care because of financial concerns, even when they have health insurance. These barriers include lack of clarity and hurdles when requesting coverage for preventive screenings.

For almost 30 years, I have worked to offer women practical and creative ways to navigate diagnosis of a serious illness, treatment and survivorship—work shaped by lived experience and by an understanding of how easily the health care system leaves patients to navigate their care alone.

When helping my own clients, I will often see the electronic after-appointment notes in their online charts. It is not unusual to find patients gratuitously referred to as “hysterical,” “anxious” or “highly agitated” by non-mental health professionals whose job is to learn about their symptoms, order the proper tests and help them find a path to healing.

My women’s health advocacy book, When Women Get Sick, was released last year. I’ve spoken at many venues and shared information and conversations with wonderful women lighting the way. I find myself frequently returning to foundational lessons to navigate cancer and other illnesses.

First, draft a team—as I learned while helping my mother, today living in Manhattan and healthy and vibrant at age 87. I like to tell women, “You’ve been showing up for others for years, now rely upon them, your own personal safety net.” Choose a point person, a “chief of staff” to help you track your needs and coordinate support.

The next thing I emphasize is being proactive. Reach out to the right stakeholders soon after you get a diagnosis and before a crisis hits, people like administrators in your doctor’s office or health system, human resources at your job (or partner’s job), case managers at your health insurance company. Let them know you’re on a health journey and you’d like to be able to contact them should you need guidance. Establish a line of communication early, so you’re not starting from scratch when you’re overwhelmed.

On the insurance front, I caution women not to panic at the first bill or coverage denial. Errors are common. Take a breath, stay calm and let your team pursue a follow-up and an appeal, if necessary.

Your emotional health is as important as your physical health. Find ways to stay mentally and emotionally balanced. Build a menu of coping strategies that work for you. It can be meditation, walking, journaling, prayer, community, whatever helps steady you. Health care and disease-specific support groups offer amazing programs that are tailored to addressing women’s mental health.

Take action to feel heard. Don’t be scared to go elsewhere if you feel you are being dismissed or ignored. Even though it takes energy and effort, move on from a doctor who does not support you. There may be barriers—long waits for appointments at a new office and coverage concerns—but they shouldn’t stop you from getting the care you deserve. If completely moving on feels too big, one smaller step is to engage with a new expert to get a second opinion.

Above all else, I urge women to accept help. Support exists, and you are worthy of it, so ask for what you need. No woman should go on a health journey or survivorship alone. 

Rebecca Bloom is a New York University School of Law-educated women’s health, workplace and benefits advocate based in California. Her book, When Women Get Sick: An Empowering Approach for Getting the Support You Need, shares lessons and stories from her work.