How Black Women Can Advocate for Themselves in a Healthcare System That Ignores Them

Black woman in doctor's office — Getty Images

For Black women, there’s something deeply unsettling about being in a doctor’s office. There’s an elusive discomfort that’s difficult to describe, yet somehow we know it’s unique to us. For some, it makes us question whether we should even go to the doctor at all. And though it may be true that everyone feels some level of discomfort in these spaces, the difference is this: being a Black woman puts us at a disadvantage in every arena of life — and at this point, many of us have come to accept it — but this is one place where we truly can’t afford it. This is the one place where it can mean life or death.

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Canada has long been idealized as a safe landing place for immigrants around the world to aspire to live in — thanks largely in part to a universal healthcare system that’s become the envy of the world. It’s a system that implies fairness, access, and equality. But if you look closely, you’ll see the cracks — and those who are falling through them.

In Canada’s seemingly fair and equitable healthcare system, Black women are 43 per cent more likely to die from breast cancer than white women, yet seldom studied in breast cancer research. The research that does exist sounds the alarm around the strong possibility that they’re being underscreened, despite the more serious outcomes. A Black woman’s reproductive health faces vulnerability as well — according to the Canadian Women’s Health Network, they’re three times more likely to have fibroids than other races, more likely to have endometriosis, and still less likely to be diagnosed for it, or screened for cervical cancer.

Black woman with hands together in a doctor's office, showing the waist down. — Getty Images

Black women have a desire to be seen

Equally troubling is anecdotal evidence that tells the story of the frustration and erasure that Black women feel in their quest to feel well. Amanda Roberts is a Black woman who’s familiar with that frustration, going 12 years misdiagnosed with a rare autoimmune disease called Hidradenitis Suppurativa — a painful skin condition that was brushed off by her doctors as acne.

Even after being diagnosed correctly, she went through three dermatologists before landing on one she’s comfortable with. Her experience is one that many Black women can relate to. “With my first dermatologist, when I talked to him, it was like I wasn’t there. He didn’t treat me like a whole person,” Roberts recalls. But her second dermatologist would prove to be even worse, focusing on her then plus-sized body. “Because I sit at the intersection of a woman, being Black, being young and then also being plus-sized — this doctor looked at me, and the only thing she told me to do was to lose weight.”

Eventually, Roberts did lose the weight; not because of her doctor’s advice, but because she wanted to be taken seriously. Whether her poor treatment was a result of being plus-size or Black, or a mixture of both, everyone deserves investigative care from their healthcare provider. Her healthcare journey within the context of a pandemic revealed yet another unnerving reality. Code switching — the practice of changing language, mannerisms and body language when in the company of people from a different class or race — may help Black women access the privileges that other races experience. “I actually think that I was able to get surgery within three months of when I needed it because I had exclusively phone consultations with doctors. They didn’t know that I was Black.”

Over the phone, her healthcare experience compared to her in-person appointments noted as a stark difference when it came to her treatment. Following her phone consult, one doctor put out multiple referrals to surgeons in an attempt to increase her chances of acceptance. After being accepted by a surgeon and speaking to the administrative assistant over the phone, she was put ahead of other patients — a gesture Roberts had never experienced before. It was an experience that made her question how she was being treated in person and whether she was getting the best care face-to-face.

A look back: Disturbing history for Black women and medicine

Poor treatment for Black women in healthcare is not a new concept. A deeper look at the history of Black women and American medicine is all it takes to understand where the mistrust comes from. Dubbed the “father of modern gynecology,” J. Marion Sims conducted experiments on enslaved Black women, not only further developments in the field, but to ensure healthy Black slave births for America’s economic gain.

This mistrust — it stems from years and years of enslavement and also the mistreatment and unethical treatment that Black people, as well as other racial groups have faced as a result of science.

From 1845 to 1849, Sims carried out experiments on Black women’s genitalia without anesthesia, mostly because of the widespread belief that Black people felt less pain than white people. Even today, modern medicine grapples with ridding itself from this outright lie. In a 2016 study, 12 per cent of medical students surveyed said that Black people had less sensitive nerve endings than white people, and 58 per cent believed that Black people had thicker skin than their white counterparts.

Amoy Jacques, co-founder and co-owner of Wombcare International, an organization that provides Black women with reproductive health services, explains how this history leads to mistrust of the healthcare system among Black Canadian women.

“This mistrust — it stems from years and years of enslavement and also the mistreatment and unethical treatment that black people, as well as other racial groups have faced as a result of science,” she explains. “That also creates a delay in someone accessing care. For example, for a woman that has fibroids, research shows that there’s oftentimes a three-year delay simply because of that lack of trust.”

A need for Black female representation in research

The problem has tentacles that stretch even further. In a paper published by the Journal of Health Care for the Poor and Underserved, University of Toronto researchers uncovered that there’s little to no healthcare data related to race and ethnicity in Canada, especially as it relates to cervical and breast cancer among Black Canadian women.

Atiqa Mohammad, healthcare consultant and founder of Public Health Hub, highlights the problem with the lack of Black female representation in research. “Black women in Canada face these poor health outcomes and are overrepresented in rates for cancer, HIV AIDS, cardiovascular disease and diabetes. But there is a very small fraction of study that focuses on the health of Black women in particular,” says Mohammad. She goes on to break down how more data would elevate a Black woman’s overall healthcare. “The data would be able to inform policies, those policies would lead to potentially more community outreach and more funding directed towards ensuring that Black women are screened more often. Research leads to policy development and policy development should be incorporated into clinical practice.”

Policy development could mandate that Black women are screened for illnesses they’re predisposed to, which would be fundamentally life-saving — but first the data has to be collected. According to Jacques, data is being collected on a small level, but in a very fragmented way. “There are some hospitals that will collect race-based data, but it doesn’t necessarily translate into a population intervention or population care approach.”

Black woman alone in doctor's office — Getty Images

An action plan to receiving better care for Black women and people of colour

All of this leaves a Black woman vulnerable in a doctor’s office, so what can she do to advocate for herself in a system that doesn’t pay attention to her? Jacques recommends first doing the internal work of dismantling beliefs that she must be strong and well-dressed when visiting a doctor — a survival mechanism that Black women often use to be taken seriously in these spaces.

She affirms that Black women should adopt a self-assured mindset, regardless of what they look like. “If I don’t look well, it’s because I’m not well. And I believe that I’m not well and I believe that I need to be paired with someone who’s going to believe my story. So the first thing is dismantling those beliefs and really owning that you deserve quality care,” says Jacques.

Next, she outlines a “three C’s” approach for looking for the right healthcare practitioner: make sure they’re compassionate, competent and confident. The Black Physicians Association of Ontario can help by pairing you up with a culturally humble healthcare provider.

Jacques also recommends that patients write out their story before seeing a doctor. “Once that healthcare provider can connect to your story, it changes the trajectory of where you’re going to go. I’ve seen it happen every single time,” she explains. Assertively telling your doctor what you need will shift the conversation. “Communication is paramount when it comes to advocacy.”

These are 5 questions Black women should arm themselves with

Communication isn’t always easy, especially if you’re feeling out of your depths in an environment you’re not familiar with. Dr. Alison Gottschalk, a naturopathic doctor with a focus on women’s hormonal health and advocate for informed consent, recommends asking yourself these five questions to ensure that you’re getting the best care.

Have you had the proper informed consent conversation with your healthcare provider?

“You have the right to ask questions, discuss details about the suggested treatment and viable treatment alternatives, all while feeling comfortable enough doing so, in a judgement-free setting,” Gottschalk says. She suggests using the acronym PARQ to structure your discussion: talk about the suggested treatment/procedure (P), any viable alternatives to the suggested treatment, with comparable results (A), any associated risks to the suggested treatment (R), and any questions you may have (Q).

Are my health concerns being fully addressed?

Gottschalk says you’ll know this by the questions being asked, and the level of investigation being done. “You should be able to leave your doctor’s office with the confidence knowing that your health concerns are being investigated appropriately.”

Am I my own biggest advocate?

Your care relies heavily on how you express your symptoms and listen to your instinct. “There is no medical textbook or doctor in the world who is going to understand how you experience your own symptoms better than you. Intuitively, if something feels ‘off’ to you, it probably is, and it is time for us (the doctors) to listen.”

Is my healthcare provider capable of providing the level of care I’m looking for?

For example, if you’d like to incorporate nutrition into your care, it can’t be assumed that any doctor will give you the best advice. “If you’re wanting to incorporate nutrition and supplements as part of your healthcare plan — we must ensure that your prescribing doctor is trained in these areas.”

Is it time to explore different options?

Remember that when it comes to healthcare providers, you have options. “If you’re being repeatedly dismissed by your doctor, or have been prescribed medications to mask your symptoms — rather than get to the root cause — it may be time to explore different avenues,” advises Gottschalk.

The system is flawed, but with knowledge comes power. As a Black woman, it’s important to understand how we’re feeling and communicate our symptoms as clearly and accurately as possible. Listening to our instinct is critical — don’t be afraid to ask questions, push further and seek out all of your options. In a system stacked against us, being our own advocate is the most effective tool we have to receive the care we deserve.