EmpowHERed Health: Reforming a Dismissive Health Care System

EmpowHERed Health

Reforming a Dismissive Healthcare System

S. Mayumi Umi Grigsby

new degree press

copyright © 2020 S. Mayumi Umi Grigsby

All rights reserved.

‘EmpowHERed’ Health

Reforming a Dismissive Healthcare System.

ISBN

978-1-63676-626-3 Paperback

978-1-63676-309-5 Kindle Ebook

978-1-63676-310-1 Digital Ebook

To my mother who tells me to turn on the light like Thomas Edison; to my sister who helps me to keep the light on; and, to my father, who told me to dream even bigger than Edison.

Contents

Part 1

The Status Quo Is UnacceptablE

Why EmpowHERed Health?

Foreword

INTRODUCTION

EmpowHered Health: Reforming a Dismissive Healthcare System.

Why EmpowHERed Health?

1

‘But, Will I Lose Weight?

My Story.

2

Guilt, Trauma, and COVID-19

COVID-19 and Women.

3

Make Sure They Know You’re A LawyeR

Why it matters [that I’m a lawyer] and why it doesn’t.

4

It Was Fabulous!

A modern girl, with a modern problem and a modern solution.

5

I Was Doped Up, and I Liked IT

When pregnancy isn’t a magical experience.

6

For the Sake of Black Women’s HealtH

Why representation matters.

7

Stories Told and Yet UntolD

One woman’s choice.

8

Yo! I Think I’m Traumatized!

Trauma has a different meaning for different people.

9

Dear BreonnA

Racism is a public health crisis – especially for Black Women.

Part 2

Fighting a Dismissive Healthcare SysteM

How to Lead the Fight to Reform a Dismissive Healthcare System.

10

How to Lead the Fight to Reform a Dismissive Healthcare System

Nichole shows us how to fight.

11

And Now, For Some Good News

Terri’s Unforeseen and Welcome Good News.

12

You’ve Got to Be Your Own Badass.

The Importance of Being Your Own Advocate.

Part 3

A Doctor Will See You NoW

So Why Is It Different for Mental Health?

13

We Pray When We Have Cancer, but We Still Go to the Doctor. So Why Is It Different for Mental Health?

Mental Health And Cultural Competency.

14

I’m So Happy It’s You.

Representation in Real Life.

Part 4

Intersectional PerspectiveS

In the Beginning…

15

In the Beginning...

Sexual Health Education and Gender Norms.

16

It’s Not the FlU

Contextualizing and LGBTQIA+ Needs in Healthcare.

17

Son, You’re Going to Be OK

And, he was

18

AmaliA

An Immigrant Story.

Part 5

Reforming A Dismissive Healthcare SysteM

Aren’t We Worth It?

19

Aren’t We Worth It?

Yes, We Are.

20

Forging a Path ForwarD

Where Do We Go From Here?

Acknowledgements

Appendix

There are years that ask questions and years that answer.

—Zora Neale Hurston

Part 1

THE STATUS QUO IS UNACCEPTABLE

Foreword

On the morning that my sister had surgery to remove her fibroids, I felt hopeless. Hopeless because my sister had excellent health insurance. She went to the doctor regularly. She kept up with all of her recommended yearly exams. She listened to medical advice. And yet, she found herself in what would go on to be an almost five-hour surgery to remove thirty fibroids (!) after months of largely dismissed expressions of pain. Sadly, my sister’s experience is not unique, and is shared disproportionately by many women of color in the US. Here, she shares her story and that of many other women with the hope that we can feel more empowered to advocate for our health.

—Professor Diana Grigsby-Toussaint

Introduction

EmpowHered Health: Reforming a Dismissive Healthcare System.

My mother was pregnant with me when she went to visit my father, a former government minister who had joined the political opposition in Liberia, in jail. During the visit, a soldier pointed at her belly and threatened to cut her open to find out the sex of her baby.

My mother was so tired because she had a daughter at home, she was pregnant, and she had to take time out of her day to make sure her husband was fed. She looked the soldier straight in the eyes and told him, Whatever you want to do.

Now, my mother is not a doctor, but she knew that that level of stress, threats to harm her and her unborn child, was not healthy for her or her baby. Still, she stood up for herself. Thankfully, the soldier left her alone.

Months after this unnamed soldier threatened her, I emerged, relatively unscathed, with a touch of jaundice. This story, which my mother reminds me of every time I ‘act up,’ is not only a constant reminder of the fact that she is, has been, and will always be a gold standard for resilience, strength, and grace. It is also a reminder of a) how vulnerable women are when pregnant, and b) what they will do to survive. And finally, it reminds me that all over the globe, women are called upon to protect themselves, their families, to survive and thrive while seemingly under constant threat of violence and callous indifference.

My family left Liberia at the onset of a yearslong, brutal civil war. We separated for a while. I lived in France, my sister in Germany, my father in Belgium, and my mother in New Jersey in the United States. I still remember the move to the United States symbolized an end to the years of separation, and I was truly grateful to be granted political asylum.

In many ways, the move to the United States and the subsequent journey from native Liberian to adopted Chicagoan and naturalized American has been the realization of a true American dream for me, a native half Americo-Liberian, Liberian. Although, the framing of my story as the ‘realization’ of an American dream sometimes feels like a minimization of the hard work, money, blood, sweat, and tears that I and other immigrants like me have invested while pursuing this ‘American’ ‘dream.’

But, calling this country, the United States, home, does not insulate it from criticism. When it comes to the way health care providers in the US sometimes treat Black women, criticism is warranted.

* * *

For some of us, we only come into contact with healthcare providers when we are at our most vulnerable. Reasonably, we have treatment expectations. Not only do we revere doctors in the United States, we expect that they want to take care of us—that they want to make us better. Most of them must want that. It is impossible to think that anyone would invest the time and resources in becoming a doctor if that were not the case. However, doctors are humans and are fallible. They can fall prey to the same ills that befall all of society, including implicit bias. Mistrust and misconceptions influence how Black people are treated and affect the care Black women receive today.

In the United States, discussions of abortion or a public option or Medicare for all dominate conversations about women’s health. However, shouldn’t we also explore how we can make healthcare a more human experience for women? In 2020, when we as a society are having real conversations about why a global pandemic can have such a devastating disproportionate impact on women; and, facing long-simmering tensions around racism and bias, could now be the time to change things for the better? Could now be the time when we achieve true equity in health for all?

The truth is we have an opportunity to move away from the status quo in this moment in 2020. We should because the status quo is not great for a lot of us, especially women. Although women are more likely to suffer from chronic pain than their male counterparts, doctors are more likely to dismiss women when they complain of pain.¹ Doctors are more likely to tell younger women to lose weight, without assistance or support to do so, while at the same time prescribing preventive therapy for their male counterparts.²

It isn’t only a cis and straight woman problem. Lesbian, gay, bisexual, trans, and queer (LGBTQIA+) individuals are hesitant to access healthcare due to inappropriate questions and ill-informed doctors.³

More so, Black women suffer from multiple forms of oppression related to both their race and gender. Health disparities are particularly terrible for Black women. How do we know that this issue is particularly serious for Black women, or that they get dismissed continually? Data.

Black women are more likely to suffer from maternal health complications—they are three to four times more likely to die from causes relating to pregnancy regardless of socioeconomic status or level of education.⁴ Black patients are also forty percent less likely to receive medication to ease acute pain as their White counterparts.⁵

As Black women, when some of us feel dismissed, we can often assume that it is because doctors have their reasons and that we have to trust in them. However, what happens when those interactions are consistently unpleasant? What happens when those unpleasant experiences veer toward being dangerous or deadly? The data shows that for a subset of the population, Black women, interactions with healthcare providers are more likely to be negative.

Healthcare professionals are less likely to take Black women’s health concerns seriously, no matter their background, education, or income.⁶

For Black women, living at the intersection of multiple forms of oppression, dismissal by doctors can be deadly.⁷ And many studies show that this dismissal is not attributed solely to socioeconomic status, class, or lack of health insurance.

Take ‘Sheila,’ for example, an attorney at a law firm in Boston. I interviewed Sheila for this book. She is a happily married mother of one adorable son. When she first met her husband, they wanted six children. After he watched as she suffered through a harrowing delivery, his perspective changed, and they are both now questioning how many children they want to have.

Having lost several pregnancies to miscarriage, Sheila knew she needed a specialist. She did everything right. She did her research, looking for a doctor able to assist her through her pregnancy with transparency, expertise, and warmth. Her research led her to a specialist at what was considered the premier hospital for pregnant women in Massachusetts.

While the initial meeting with her doctor was relatively friendly, as Sheila questioned her and voiced her concerns, the responses became significantly less warm. By the third meeting, she started to feel cold, like she was paranoid. She mentioned her history of miscarriages, but outside of her doctor not wanting her to gain more weight, her doctor did not do any memorable research or digging into her history of unsuccessful pregnancies.

The doctor was not present for her delivery, which included fifty hours of labor and culminated in an emergency C-section; for comparison, the typical first-time mother takes six and a half hours to give birth.⁸ The delivery would never have been successful at all, had she not insisted something was wrong.

Everyone would assume—a professional woman, highly respected hospital, well-reviewed specialist, and decent insurance—that there would be no problems. Not quite. Sometimes, even having access, as in Sheila’s case, is not always enough. We have to know our rights. We need to advocate for ourselves. We need to stand firm in our beliefs. We need to be empowered.

* * *

Let’s continue to look at the roles systemic racism and implicit bias play in health disparities. According to a New York Times survey of more than 2,400 women with chronic pain, eighty-three percent said they experienced gender discrimination from their healthcare providers.⁹ Black patients were thirty-four percent less likely to receive opioids for acute pain than their White counterparts.¹⁰

The authors of the study suggested that the reasons for these disparities were ‘likely complex and multifold’ including ‘implicit bias, language barriers, and cultural differences in the perception and expression of pain and institutional differences in emergency rooms that serve mostly Black and Hispanic patients.¹¹ Other reasons suggested for this disparity? That emergency room clinicians could be ‘choosing which patients get pain relief based on conscious, unconscious, and implicit bias as well as negative stereotypes based upon race, ethnicity, and class.¹²

A 2016 study indicated that a substantial number of medical students and residents believe, falsely, that there are biological differences between Black and White people. One such belief was that Black people have thicker skin than White people.¹³ Medical students and residents who believe Black people feel less pain than their White counterparts are more likely to suggest inadequate treatment for Black patients.¹⁴

These disparities exist across the board–even beginning with infants. A study suggests that Black babies are more likely to survive when cared for by Black doctors, and three times more likely to die when cared for by White doctors.¹⁵

There is substantial research linking healthcare provider beliefs and implicit biases about Black women to racial disparities in health and healthcare. While these biases might be implicit, they still affect the care and recommendations provided by healthcare providers, and the trust a woman, specifically a Black woman, should place in the recommended treatment.

In 2020, we as a society are now grappling with both an anti-feminist and misogynistic global pandemic disproportionately impacting women and women of color. We are also addressing years of systemic racism and implicit bias.¹⁶ ‘Misogynoir’ is a type of misogyny that is directed specifically at Black women.¹⁷ It recognizes the way in which ethnicity, gender, and race have come together to create a unique type of oppression.¹⁸ Black women are subjected to this oppression not only by men, but also by women who are not Black.¹⁹ COVID-19 is most certainly ‘mysogynoir-ist.’

* * *

Like Sheila, something similar happened to me. For years, I lived in pain. Doctor after doctor told me it was normal. Finally, I researched a specialist, made an appointment, and my self-diagnosis was confirmed.

A little research should have led any doctor to diagnose my symptoms accurately, and yet that did not happen. The lack of an accurate diagnosis led to an inconvenient but necessary result at an inopportune time. The story of my invasive surgery and lengthy recovery will be covered in detail in a later chapter.

I, like Sheila, am also an attorney, and I had fairly decent insurance. But interestingly enough, while I am also not the person you would think this would happen to, doctors also dismissed me. I fit the profile of someone with my diagnosis perfectly. However, I am also a Black woman, and based on data, my pain is often not believed. I am likely to be dismissed, unseen, and unheard.

What happened to me was in fact a textbook case for someone like me—Black, female, and in my thirties.

Sheila and I both pushed when we knew something was wrong, and our doctors dismissed us. Sheila knew all too well the feeling of being questioned while working as a Black female lawyer in a firm, while I assumed my doctors would do the same research I did. And so when they told her she was fine, she believed them.

Like Sheila, I also assumed my pain was ‘fine.’ I had to do my own research. I had to find my own specialist. And, through that experience, I found other dismissed women. Nevertheless, I found a path toward empowerment, and now I want others to feel the same way.

The dismissed women I found were other women in similar predicaments interacting with the healthcare system. I found one who told me that she felt the treatment she received from healthcare providers while giving birth to her first child marred what should have been a magical experience. Another experienced polyps, like me, and was chastised by her insurance company for not telling them she was pregnant. She was not, and found this accusation to be especially tone-deaf and painful as she wanted to have children. These were all women in their twenties and thirties. These were all professional women. These were all women who appeared perfectly healthy. These were all women like me.

I then expanded my outreach. I spoke to LGBTQIA+ individuals, including non-binary, transgender, and gender-nonconforming individuals. Then, I talked to doctors. They understood the lack of trust. One had witnessed the potentially devastating impact of a lack of cultural competency.

In doing research for this book, it became clear that taking on a system with entrenched systemic racism and implicit bias is necessary, urgently, but the system will take time to change. Women, specifically Black women, need tools in their arsenal now.

* * *

For me, empowerment and feeling empowered means that if and when I am dismissed, I refuse to allow the system to silence me. I chose the title "EmpowHERed Health" in order to center my personal story as a Black woman. However, to be clear, this book is about elevating the most marginalized of us all in order to elevate all of society. EmpowHERed Health is about inspiring others to have confidence when fighting back.

EmpowHERed Health: Reforming a Dismissive Healthcare System tells the story of several Black women but also makes parallels with experiences of the LGBTQIA+ community. This book is written from the perspective of a cis-, hetero- Black woman but is also for others who seek empowerment to fight an increasingly dismissive healthcare industry.

Current events, including a summer full of protests and civil unrest, has shown us all at least one thing: the status quo is unacceptable. Let’s reimagine and work toward an even better future.

After having conversations with women and other marginalized individuals based on an aspect of their identity, exploring their stories about their health, the intention of the stories in this book is to put a human face on health. The focus of this book is on making women’s health more equitable. The goal is health equity. We should make sure we are all treated with dignity, respect, and that we are all seen and trusted and believed.

We can all become empowered and help others find those truths. In this book, I posit that together, we can turn the tide.

1 Robert Powell and A. Pawlowski, Gender bias in healthcare may be harming women’s health: What you need to know, Today.com, July 18, 2018.

2 Ibid.

3 American Heart Association News, For LGBTQ patients, discrimination can become a barrier to medical care, Heart.org, June 4, 2019.

4 Andreea A. Creanga et al., Pregnancy-Related Mortality in the United States, 2011-2013, Obstet Gynecol. 2017 Aug; 130(2): 366–373., doi: 10.1097/AOG.0000000000002114.

5 Kelly M. Hoffman et al., Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites, Proc Natl Acad Sci U S A. 2016 Apr 19; 113(16): 4296–4301.

6 Ericka Stallings, The Article That Could Help Save Black Women’s Lives, Oprah.com, accessed September 7, 2020.

7 MiQuel Davies, Racism in Healthcare – For Black Women Who Become Pregnant, It’s a Matter of Life and Death, National Women’s Law Center, April 13, 2018.

8 Richard Knox, Babies Take Longer To Come Out Than They Did In Grandma’s Day, NPR.org, March 31, 2012.

9 Camille N. Pagan, When Doctors Downplay Women’s Health Concerns, The New York