Race and Cancer, Part II
I’ve had the honor and privilege of meeting a variety of people through my involvement in breast cancer advocacy. As my dear Emily Garnett used to say: “It’s the worst club with the best people.” And yet, talking with various friends expose the disparities between how those of us who are white and people of other ethnicities and races.
Racial disparities and breast cancer
In light of the resurgence of the #BLM movement and the new focus on disparities, I decided to interview my friend, Megan-Claire Chase, who is a Black woman living with the aftermath of early-stage breast cancer treatment. She has written a great deal about the racial disparities and issues she faces every day on her blog: Life on the Cancer Train and I'd recommend her blog wholeheartedly.
Q: How does being black affect the care you receive from the moment you arrive in a new office or facility?
A: From the moment someone sees me, there is a judgment about who I am, why I am there, and what might be wrong with me. I’ve experienced significant dismissiveness from doctors as to my symptoms, I am often treated as though I’m drug-seeking, and my pain is not taken seriously. There are other offices, like palliative care or pain management that I’m not told about or referred to. I’ve had to take responsibility for researching and referring myself.
Q: In light of these experiences, how does that affect your desire to seek care?
A: I’m triggered from the moment I walk into a new office or clinic. I feel from the beginning that I have to be more precise, give more information, and somehow justify my experiences for anyone to take me seriously. I can’t get visibly upset or raise my voice because then I’ll just be dismissed as another angry Black woman. I have to dress nicely and present myself as an affluent person because otherwise, they won’t pay as close attention to me. I have to think about all of this in every doctor-patient relationship and I always wonder how they are looking at me, how they experience me, and am I doing enough to make sure they will listen.
Q: If you could talk to a black woman right now who is in treatment, what would you say?
A: Overall, I would emphasize that it is okay to ask questions of the doctors. It is super important to speak up even if you are brushed off in the beginning. I have found that it is not as important to be liked by a doctor or an office and if they aren’t paying attention, get a second opinion. Your voice as a patient is super important, and if doctors won’t listen or won’t treat you, it’s your right to file a complaint with that practice or even with the medical board.
Find your voice and use it to ensure that you get the best care and so that others following you will get better care.
Q: Have you noticed any patterns in the gender or age of doctors or medical providers and how they treat you?
A: I haven’t noticed gender differences, both men and women have talked down to me. Most doctors seem surprised when I question them. I find that when I use my voice, there is a surprise when I demonstrate that I know what’s going on, that I’ve done research on my own. I’ve learned to specifically remind doctors not to speak down to me and most receive it well.
I have found that the older a medical provider is, the more difficult it is to convince them. Overall, there are lots of overworked doctors who just aren’t as up on the latest research. I have to handle these kinds of providers carefully as most older doctors don’t react well when they feel like they are put on the defensive.
Q: Have you learned anything specific about how your pain might be connected to your experiences?
A: Recently, I’ve watched Unrest, which is a documentary on Netflix which posits that chronic pain is related to childhood trauma that your body experienced but you may not consciously recall. I think there are a lot of traumas that are also generational. Treating a person means that medical professionals need to take all of that into consideration. Black patients are not treated in context or as whole people and they should be.
Q: Do you think that decisions are made for patients in cancer centers based on a stereotype rather than the person themselves?
A: I’m shocked over and over that so many people at cancer centers who have never had cancer and make decisions on behalf of patients without input from patients and then avoid the patients. Additionally, most of these people are older and white. How could these administrators know anything about my experiences or who I am?
Q: When you engage in advocacy to address patient concerns, especially the concerns of patients who are non-white, is there anything that jumps out at you?
A: Advocacy as a patient is hard to begin with. As a Black patient, it is even harder. I can’t get the positive attention that other advocates often are given from the beginning because of the color of my skin. I am judged in a different way right away. For many patients, those obstacles are too much. All patients need to know, especially Blacks and people of color, that it’s your right to be vocal and participate actively in your care.
I firmly believe that every “body” is unique and should be treated that way. Blacks and people of color historically just get shut down. When people who are not white start off questioning everything, eventually most of them lose hope, lose energy, give up.
I want to pave the way for others, especially those who are non-white. If no one speaks up, nothing will change. Each person’s advocacy flows from the essence of who they are, which makes them an effective and authentic advocate. I think you have to have a core value and passion for wanting to change the narrative and keep pushing even when you’re repeatedly told no or dismissed.
Let's raise our voices
Thank you, Megan-Claire, for all your advocacy, for speaking for those who sometimes struggle to raise their voices, and for letting me interview you about your experiences. I'm reminded of the saying...No one can do everything, but everyone can do something. I think that applies to advocacy. We're all uniquely situated to advocate for ourselves and those like us. When we raise our voice, we are raising our voices for each patient coming after us. Each voice is important and oh so necessary!
Are you a person of color?
How old were you when you were diagnosed with metastatic breast cancer?