Since the age of five, I’ve had some sort of understanding that breast cancer is the reason my mom died. At the time, it was the reason she wasn’t there to braid my hair or take me to school anymore. As I got older, it was the reason I broke down while prom dress shopping with my older brother, realizing that grief would poke holes in every milestone without her.

Over time, that understanding has deepened. In recent years, I’ve struggled to come to terms with the fact that my mom, as a Hispanic / Latina woman, was misdiagnosed on three separate occasions, dismissed for months despite her pleas for imaging, and, once finally diagnosed as stage 4 de novo, was turned away for treatment by one of the top cancer-treatment facilities in the U.S.

If you’re a POC in the community reading this, I’m certain that you see a familiar trend; you most likely have personally lived it. I’m ashamed to say that it took me until recently to really identify it. To really call it what it is. I’d like to say that it hurt too much. It hurt too much to not just blame breast cancer as a disease that affects 1 in 8 women, all on an even playing field.

Another important truth is that I have immense privilege as a white-passing person of color, both as someone acting to prevent breast cancer and as a leader in the community.

My Experience and Privilege as a Previvor

What triggered me to see these truths for what they are? It started when I began to navigate my own story and place in the breast cancer community.

A few years ago, after a scan and a biopsy of a suspicious mass in my left breast, a kind radiologist recommended I do genetic testing based on my strong family history. I was in college at the time and unable to get insurance to cover the hereditary breast cancer test, so I decided to put it off until after college.

A few years later, I was in journalism school and decided to write about access to genetic testing. I met my future cofounder, Paige, in a support group meeting when looking for people to interview. She introduced me to Allie, Leslie, and Dani. All five of us, with very different diagnoses and backgrounds, decided we had to help others impacted by breast and gynecologic cancer find community. Together, we founded The Breasties.

Meeting them when I did encouraged me to begin working through grief and trauma, which I spent a lot of time pushing down. I decided to try genetic testing again and was able to get it covered by insurance. Having learned the stories of many high-risk members of the community, I was hoping to learn definitive information from it. I was hoping to be BRCA positive. I wanted evidence to back up my fear of developing breast cancer one day, like my mom.

Leslie, who is also Latina, was diagnosed at age 23 with stage 4 breast cancer, and when her genetic testing came back with no information, her doctor said that she should keep retesting every few years because there’s probably something they just can’t detect yet.

Leslie was a big reason why I started advocating for myself in a healthcare setting. She came with me to my first consultation with an oncologist for a preventative mastectomy. When I left the doctor’s office in tears following a few inappropriate comments, Leslie told me that I deserved to find a new doctor. She knew I felt like I didn’t deserve to “shop around” for care.

I’ve since been able to have a preventative mastectomy with an incredible team that I was fortunately able to travel to. I know that there is immense privilege in my experience: in me knowing my mom’s story, having access to genetic testing, and being able to significantly reduce my lifetime risk of developing breast cancer through a preventative mastectomy.

My Experience and Privilege as a Leader

When we set out to start The Breasties, we were hyper-focused on breaking down the barriers that exist in the community across diagnoses. While this is important, I’ve learned that it’s not enough. It’s not even close.

Beyond diagnosis identifiers, there is so much more that fractures the community — that which keeps Black and Brown community members from even having the luxury of thinking about a togetherness that transcends a diagnosis.

With Leslie and me being the only two POC voices at the helm of the organization in the beginning (both of us arguably white-passing), we’d look around at events and be completely confused. Why wasn’t the world we lived in represented in the spaces we created?

It took a minute for me to really start to recognize that. To call out my own naivety and privilege. To come to terms with how deeply entrenched white supremacy is in the cancer support space. How can the support space not be? The research is. The doctors’ offices are. The treatment options are. The genetics and preventative care options are.

As I’ve begun to share my story and immerse myself more deeply into the community, I’ve experienced and witnessed microaggressions that have shaken me to my core.

• I’ve been silenced at times in meetings with potential partners who favored my white cofounders’ diagnosis stories.

• I’ve been asked to publicly share my mom’s story as a Latina woman with breast cancer to meet a diversity sales quota for a company that I worked at for years.

• I’ve seen white community members routinely dismiss and put down community members of color’s experiences and decisions.

The list goes on both in the community and within the organization, and I know it will continue to.

Despite this, I carry a tremendous responsibility, one that transcends my story or experiences. One that I’m not proud to say I haven’t always acknowledged as being mine to carry.

I am committed to owning the responsibility and duality that I carry as a white-passing community member and leader in this community. Everyone needs to be included, truly included in support.

I owe it to my mom. I owe it to BIPOC community members, and I owe it to myself.