This piece is published in collaboration with Echoing Ida, a Strong Families project.
The Affordable Care Act has expanded access to services for 7.3 million in the Black community. It is giving many people access to a variety of preventive services like mammograms, breastfeeding support, and prenatal care, as well as coverage for issues formerly considered pre-existing conditions. This is huge for breast cancer advocates who have long been encouraging early detection and screening, and has the potential to positively affect breast cancer rates among Black women, for whom breast cancer is the second most common cancer. But improving access wasn’t the only problem facing Black women with regard to breast cancer survival—we’ve allowed our fear and the stigma associated with illness and poverty to silence our stories, and
that silence is literally killing us.
Some survivors understand the importance of sharing their experience and scars to help address the stigma associated with health care. Deborah Reid knows this all too well. Reid, a 58-year-old dance instructor with Stage 3 breast cancer, said she’d avoided mammograms for eight years due to their unpleasantness. In an interview with the New York Times for a recent article on the racial gap in breast cancer among Black women in the South, Reid explained that hearing someone else’s story and sharing hers became her healing mechanism. Reid was inspired to take care of herself after seeking counseling from a reverend, a 12-year survivor of colon cancer. Now, she educates others about breast cancer by showing them her own breast and talking about the symptoms. “I revealed my breast so they could see it. It was swollen. I made them touch it. It shocked them,” she said. After sharing her story with her dance troupe, Reid says all the women have either had or are going to get mammograms.
It’s the silence that has allowed my own ignorance to fester. I was six when I watched my mother and aunt, both nurses, change the dressing on my grandmother’s absent breast. Despite the years of pain and suffering cancer must have caused my grandmother, and the ripple effect it no doubt had on my family, in more than 20 years, we’ve only had two conversations about our family and the disease. Even with a family of medical professionals, discussions of generational health in our family are awkward. I rarely have an answer when my provider asks about my family history—I remind myself to ask my family, but because the pain of loss is too strong, their answers are often only a sentence long.
My grandmother had a lumpectomy to remove the lump they found in her breast, and later a full mastectomy. My mother said that while growing up, money was tight, and my grandmother only took the family to the doctor when something was wrong. Raised in Mississippi with little education, my grandmother was taught that you live through pain, and seeing the doctor was for emergencies—not as a proactive measure. And while I have health insurance and go for my annual checkups
, I haven’t talked to my doctor about my risk for breast cancer, because the stories and need haven’t been there. Only now do I realize the gravity of her illness and the potential for it in my own body, and my mother’s as well.
When our families don’t talk about issues, when women hide their stories, we don’t know to be on the look out for them—which can mean the difference between longer lives and death. With breast cancer, this is critical.
Early detection, a key factor in fighting breast cancer, is particularly important in the Black community. We are twice as likely to be diagnosed under the age of 35 as our white peers, and we often have denser breasts, making cancer harder to detect in mammograms and requiring further testing. Black women of all ages have higher mortality rates from breast cancer, as well as an increased incidence of triple negative breast cancer (a more aggressive and less treatable form of the disease). Twenty percent of Black women on Medicaid are diagnosed with breast cancer late, in Stage 3 and 4,
compared to only 11 percent of their white counterparts . Though the aforementioned opportunities through the Affordable Care Act may improve these statistics, if we don’t know our risk or talk about our health, access and policy changes mean nothing.
It’s true, addressing the barriers and knowing the statistics are steps in the right direction—we have to know what we’re dealing with. But with it, we need to create a culture in our community where it is embraced, even encouraged and normalized, to talk about our bodies. There’s such a stigma associated with talking about health and illness, especially within marginalized communities and families in poverty. The stigma associated with illness and poverty perpetuates a scarred and tired narrative, keeping us silent and invisible from a society that devalues our lives. Racist and classist stereotypes incorrectly assume that we are unable and unwilling to care for ourselves, when in reality the resources aren’t equitably in reach. When we share our whole selves, we give others the opportunity to relate to our lives and those who mean to judge no longer have the power to deny our humanity or ignore our lived experiences.
Research shows that stories have the power to improve life outcomes. A 2011 trial with 300 African-American patients found that listening to personal stories “helped control high blood pressure levels as effectively as the addition of more medications.” Over a three-month period, patients who watched DVDs of personal experiences, versus those who watched informational videos, had, on average, lower blood pressure. Hearing the experiences of someone one can relate to
helps to build a relationship and create trust, particularly in a medical setting. “Telling and listening to stories is the way we make sense of our lives. That natural tendency may have the potential to alter behavior and improve health,” Dr. Thomas K. Houston, lead author of the study, told the New York Times.
“I’m not a weak person. I decided to be a messenger,” Reid told the Times on her new calling. And she’s right; we’re not weak. We can heal each other with our stories. We have the power to take back our own health with our words. I’m going to break the cycle in my family. Will you break the one in yours?