Meet Melissa, Uncovered
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When I was diagnosed, I decided to retreat and create boundaries, and that’s my advice for others in a similar situation. I announced my diagnosis to the public on social media because I wanted to control my own narrative. As Black women, we often are not only stressed with our personal lives, but also the additional pressure society puts on us. As Black women, our everyday lives are consumed with dealing with racism, microaggressions, the status quo, white fragility, ignorance, cultural bias and always trying to advocate for ourselves. It can be really exhausting and stressful, so pick your battles—that’s another piece of advice for women of colour.
“Cancer doesn’t discriminate, but people do“
My response to white people with breast cancer who ask why it’s about race is: Why isn’t it about race? I had to stand my ground when I started advocating and talking about my story as a Black woman with breast cancer. White friends and acquaintances started questioning why I was bringing race into it, because “cancer is cancer.” The reality is, this is a race issue because it’s my life, my mortality, and I’m a single mom, so it also influences my daughter. It’s also about race because the research and statistics often represent white people, and don’t represent the trials and tribulations that I’m going to face as a Black woman. Cancer doesn’t discriminate, but people do.
I’m grateful I had a great medical team with a few providers who understood the status quo and their privilege. They were generally willing to listen and learn from my perspective, which is important as it gave me more energy to focus on myself. My white reconstruction surgeon told me upfront that he didn’t have examples of people of colour to show me what my surgery results could look like. He didn’t make an assumption that white breasts are similar to mine. He recognized the gap and prefaced that for me. I offered photos of my results so he could have an example of a Black person moving forward. My other surgeon knew people of colour can keloid when healing, something specific to melanated skin. These kinds of encounters are so important and made me feel seen.
“People do see colour, but they don’t want to see the reality of what people of colour endure”
However, I did also encounter microaggressions from others that were harmful, and felt a lack of representation in the support services provided and lack of family and identity inclusive language leading to misidentification. This was an unexpected stressor for me to navigate. Secretaries and nurses would often make the assumption that I was married. You have to be mindful of how you address people and what your assumptions are. I would have liked to be asked what I want to be called. Being misidentified is really triggering and brings rise to emotional trauma from other experiences in life. I didn’t even have the option to put my sisters or daughter down as a caregiver. On paper, I couldn’t identify the way I wanted to in a way that accurately reflected who I am, including race. That action alone of providing an option would help with patient experience. If you don’t know who I am as a patient, how will you treat me in the best way? I had a nurse ask me where I was born and raised while preparing me for chemo—this question is also not inclusive, nor does it help them get to know me as a person. It’s a microaggression disguised as curiosity. It’s a reminder that I don’t belong. People do see colour, but they don’t want to see the reality of what people of colour endure.
It would also be amazing if we had Canadian data and research. It’s unfortunate we have to use statistics and studies from England and the U.S. because there is such little research in Canada. If Canada has a universal, inclusive healthcare system, how come our research and data isn’t reflective of that? I believe Canada needs to step up its game to represent women of colour being impacted by these diseases.
“You’re uncomfortable because we’re asking to be treated like you”
I want the world to understand that being a woman of colour, it always ends up being a badge that you are given before people even get to know who we are. I don’t want to be a Black woman with breast cancer, I just want to be a person who had breast cancer, and have equitable options that support my chances of survival as my white friends have. That’s all I ask. We’re humans. All lives matter, all humans matter, right? So why don’t I matter? And why is it because of my race that you’re not helping me? In a healthcare system, there should not be racism or bias. A healthcare system should be inclusive. Why is that not happening? You have the privilege to be uncomfortable hearing these conversations about race, but I have to be uncomfortable wondering if you’re ever going to listen to me to ensure that I or people who look like me can live longer. You’re uncomfortable because we’re asking to be treated like you. You’re uncomfortable because I’m sharing my feelings, concerns, trauma with you, and you’re still vulnerable and fragile. You also have the privilege to pick and choose what you want to listen to and do for me. That’s disconcerting, disappointing and frightening.
I chose to be a part of this project because I can’t say we need better representation and not be a part of that change. I hope breast cancer ceases to exist, and women of colour and equity in healthcare systems exist, but we know that won’t happen any time soon. This is a good opportunity to gather a collective voice because there’s strength in numbers to build the kind of world we deserve. Hopefully other institutions can reflect on how they’ve missed the mark on this. How can we maximize these voices now to help and support? That’s what needs to be done. This isn’t just checking the box of doing something for people of colour. It’s not Uncovered for the month, it’s Uncovered forever. — Melissa