The Burden of Proof Should Never Fall on the Patient
What happens when Black women’s symptoms are questioned, minimized, or dismissed
Welcome to The Community Letter, a weekly reflection from the Enhance Black Women’s Health Community. Here is our opportunity to come together to discuss what’s shaping the health of Black women and other historically marginalized groups.
What’s been sitting with me this week is the reminder that Black women often need to provide evidence of our suffering before we’re taken seriously. That reminder comes from a review published in Nursing in Critical Care, about Black women having to prove the validity of their health concerns during clinical encounters.
From the minimization of symptoms to the ignoring of pain management requests, it’s not uncommon to feel as if we need proof in order to be believed. That reality is one I know all too well as a patient, educator, and coach. As I read this review, I saw my own story reflected in it, and when you read it for yourself, you might see it too.
The Patient’s Perspective
One of the biggest takeaways from the review is the frequent dismissal of Black women’s health concerns. By dismissal, I don’t just mean that providers aren’t listening to Black women. While that is certainly happening, what is perplexing to me is the minimization of Black women’s symptoms. It’s not that the symptoms aren’t visible, but that providers may feel they aren’t as bad as Black women are saying that they are.
Unfortunately, this was my reality as a patient with two primary care physicians (PCPs) who did not take my health concerns seriously. There were moments when both wanted me to prove that certain tests needed to be ordered. If it wasn’t for my self-advocacy, I’m sure those tests wouldn’t have been ordered. In my case, those tests ended up being the vital things that I needed to get my diagnosis of rheumatoid arthritis, Sjӧgren’s syndrome, and pericentral retinitis pigmentosa. Three conditions explained all the symptoms that my previous PCPs had dismissed. However, my story is far from an isolated incident.
As the review shared, it’s not uncommon for Black women to experience missed and delayed diagnoses. When diagnoses are missed or delayed, that means that Black women are not getting the preventative care that they need. That means, we might not even find out our diagnosis until the condition has worsened. I cannot help but wonder how many more lives would be saved if providers weren’t so quick to dismiss their patients’ health concerns.
The Educator’s Perspective
Another takeaway from this article is the measurable consequences that result from the dismissal of Black women’s health concerns. By this, I mean we can look at the data as health and wellness educators and see how dismissals directly translate to actual harm. From late-stage diagnoses to higher mortality risk, the data have made it clear that there are real consequences that happen when Black women’s health concerns are dismissed.
When I think about the importance of health and wellness education, I am reminded of a workshop I conducted on weight stigma in medicine. In that conversation, I focused on one woman’s story of going to a doctor for pain in her abdomen, but her pain was dismissed due to her weight. Instead of conducting a thorough physical examination, they put her on a strict dietary regimen and scheduled her for bariatric surgery. Prior to the surgery, a thorough physical examination was conducted, which revealed she had a 46 kg (or 101 lb) malignant tumor. I share this example because her healthcare team was quick to give her a diagnosis of “monstrous obesity” (yes, that’s actually what they called it) despite the fact that she told them that she was having pain in her abdomen. They made the assumption that the pain was due to her size, and they were very wrong.
As the review illustrates, those experiences of dismissal can lead Black women to delay seeking care. Even though the patient knew that their abdominal pain wasn’t normal, they had a healthcare team that wasn’t willing to see past their own assumptions. That’s why it’s critical that health and wellness educators learn about case studies like this. Through this learning, we can ensure that providers have the information they need to better advocate for their patients, which we know will positively impact their patients' lives.
The Coach’s Perspective
The last takeaway that I would be remiss if I didn’t mention is how the underrepresentation of Black women in health research can reinforce harm. It’s well known that women in general are underrepresented in research, which has contributed to significant health disparities. Given that Black women sit at the intersection of gender and race, they face unique challenges.
As a health coach with a background in nutrition, I was drawn to a recent study in the Journal of Human Nutrition and Dietetics on how health professionals and community members in the United Kingdom worked together to co-design nutrient-dense traditional African-Caribbean recipe resources. This came from recognizing that nutritional resources didn’t reflect the foods common in African-Caribbean cuisines. Thus, health professionals worked with African-Caribbean communities to co-design culturally relevant recipes that supported their nutritional health without “Westernizing” it. Not only does this support communities, but it also contributes to a greater number of culturally relevant health professionals.
Therefore, the review demonstrates the importance of ensuring that research is truly inclusive of the broader population. When we’re understanding Black women, we can be missing out on the nuanced experiences that impact their health. As coaches, we might be falsely assuming that people are choosing to be “non-compliant” when, in reality, they may not have the resources to implement our recommendations.
Community Prompt
What perspective do you bring to the table? That of the patient, educator, coach, or someone else? Let us know below.
Monthly Book Recommendation
In celebration of Black History Month, I’m highlighting a book that I believe everyone should read if they haven’t already.
If you haven’t watched my interview with Dr. Wylin Wilson, you absolutely should. Dr. Wilson’s book, Womanist Bioethics, brings to awareness the impact that devaluing Black bodies has had on the health of Black women. It’s a book that is rich not only in history but also in ancestral wisdom. No matter your gender, race, or ethnicity, this book offers a perspective not often discussed in mainstream bioethics.
Check out Womanist Bioethics and the rest of my BHM recommendations at the EBWH Bookstore!
If you enjoyed this post, come join us at The Roundtable! Our Roundtable community offers a private space for deeper reflection, monthly live discussions that explore complex health topics with nuance and care, and a growing archive of conversations you can revisit as your understanding evolves. It’s just $5 a month, and you can cancel whenever you’d like. We can’t wait to welcome you to our table!
Until next week,
Tomesha