Women of color, specifically Black women, are treated as outliers in the breast cancer community.

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Illustration by Brittany England

Picture this: After being told numerous times you were simply too young for it to be true, you’re diagnosed with breast cancer in your 30s.

You’ve only been married for a few years, and you were just getting ready to try to start a family. But cancer doesn’t care about your plans.

Decisions need to be made and they need to be made fast. You’ll need to have your breasts removed and start radiation and chemotherapy. You agree to do whatever it takes to overcome this disease, but you can’t help but wonder how you’ll look when it’s all said and done.

Armed with your Google PhD, you search for images of women with bilateral mastectomies. The more you scroll past images of white woman after white woman, the more you wonder: Where are the African American women who look like you?

With a quick adjustment to your search (this time specifying that you’re looking for images of African Americans with bilateral mastectomies), you’re relieved at the appearance of Black and brown women, but there aren’t pages and pages worth of results to look through.

In fact, most of the photos of Black women with mastectomies are above the fold.

It may seem farfetched, but this is the reality for women of color diagnosed with breast cancer in 2020. Many of the images you’ll find in the second search didn’t even exist in 2015 and 2016.

Throughout our breast cancer journeys, there have been constant reminders that women of color, specifically Black women, are treated as outliers in the breast cancer community.

For me, not being able to find images of women who look like me made me question the recommendations from my doctor. I wondered whether I was being asked to do something other Black women weren’t.

I knew scarring was common for women of color, yet the inability to find images made it impossible for me to know what to expect. I wondered whether other Black women were feeling the same way.

My experience was no better when I searched for images of radiated black and brown skin and was misinformed by the medical brochure, expecting my skin to turn red. Instead, it turned charcoal black.

When chemotherapy was still undecided, I went to find a wig at a local nonprofit in Jacksonville, Florida. Not only was I unable to find one that was covered by insurance that matched my hair texture, I couldn’t even find wigs that matched my hair color in the boutique.

After being instructed to simply hold swatches up to my head, I decided I’d just buy something out of pocket if needed. The experience completely dismissed the anxiety and vulnerability associated with preparing to lose one’s hair.

For me, the difficulty of finding women of color in the breast cancer community on social media, combined with the passing of the women I did find, was alarming.

It was almost as if women of color were dying in plain sight and no one was talking about it.

I live in Seattle and spent $500 making my own wig to avoid having the same kind of wig shop experience Jasmine endured.

These kinds of experiences are far too common among thousands of women of color diagnosed with breast cancer every year.

After meeting in person for the first time at a young adult cancer conference, we learned that this lack of inclusion went far beyond not finding women like us represented in images, but at the highest level of research that helps doctors understand breast cancer and determines how new treatments work.

Despite being 40 percent more likely to die from breast cancer than non-Hispanic white women, Black women make up only 6.2 percent of cancer clinical trial participants.

The breakout session wasn’t about improving outcomes, though. The presenters were merely stating the statistics, as if clinical trials and research weren’t imperative to finding better treatment outcomes for all communities.

We were angry with the tone of the discussion, but as we looked around the room at the faces of women from other ethnic backgrounds, we realized the feeling of being displaced wasn’t unique to our experience as Black women.

And our lack of inclusion was no longer just a feeling. It was validated by the awareness of this lack of inclusion in research.

When we left the conference, all we knew was women of color are generally underrepresented in the breast cancer community and that we could do something about it. So we did.

In May 2019, we launched For the Breast of Us, the first breast cancer community inclusive to all women of color. Our mission is to uplift women of color by sharing stories that inspire, educate, and connect. We’ve been blessed to do that and so much more since hitting the scene.

For the Breast of Us has quickly become a place for women of color to find community, discover ways to better navigate their journeys, and explore opportunities to turn pain into purpose through research and advocacy.

Together, we’ve harnessed the collective power of marginalized communities, elevating the experiences of women of color through our quickly growing platform.

We work diligently to build partnerships that help women of color gain access to more opportunities, while lowering the barriers to diversity and inclusion.

We’ve helped make a noticeable shift in the breast cancer narrative by intentionally sharing the stories of women of color, and we’ve heard firsthand how our work is helping women on their journeys.

But we know there’s so much work to be done to help move the needle on health outcomes for communities of color. And we’re here for it, because we understand just how much representation matters.

In 2019, Jasmine Souers and Marissa Thomas went from Instagram friends to partners in purpose as the founders of For the Breast of Us, the first online community dedicated to sharing stories and imagery of all women of color affected by breast cancer. The young survivors are passionate, trained patient advocates who can be found sharing their journeys alongside hundreds of women in the community they lead at Breastofus.com.