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Lessons Learned: Advocating for Yourself as a Black Female Patient

One mom shares her experiences and words of wisdom.
ByDanielle Wilson
Updated
September 27, 2021
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Let’s be real—nobody wants to visit the hospital. Even during the exciting experience of giving birth, it can be unnerving to be a patient. What’s more, as a Black woman, the anxiety is exacerbated by the reality of racial disparities and implicit bias in our healthcare system. That’s why it’s so important for Black women to know how to effectively advocate for themselves in a medical setting. The alarming truth is that it can be a matter of life or death.

Throughout the last two decades, I’ve become something of an expert on how to advocate for myself and family members within a hospital setting. As a woman of color who often gets mistaken for a teenager (when, in fact, I’m a parent to a teen, tween and infant), I’ve seen firsthand how poorly patients can be treated based on race or perceived age. As the saying goes, “that Black don’t crack!,” but the melanin in our skin shouldn’t affect the quality of treatment we receive.

Nevertheless, I’ve learned a few lessons the hard way while persevering with Crohn’s, a chronic autoimmune disease that affects my gastrointestinal system. I’ve been hospitalized countless times—once for over 26 days before and after an emergency surgery to remove two feet of small intestine, and most recently following the traumatic birth of my rainbow baby—in the middle of a global pandemic. Suffice to say: I have some advice to share so that, whether you’re staring down a planned labor and delivery or faced with an emergency situation, you can feel empowered to speak up and get the care you deserve.

Lesson 1: Listen to Your Body and Trust Your Gut

As a Cronh’s patient, I have to (literally) trust my gut and follow my instinct—because who knows my body better than me? The same applies to you! I’m very attuned to my body and sometimes meditate to focus on the specific area that’s causing me duress so I can best explain my situation.

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Still, undertreatment in Black patients is a real issue, and it dates back to our ancestors. From 1846 to 1849, a surgeon named J. Marion Sims, often referred to as the “modern father of gynecology,” performed experiments on Black women’s genitalia without anesthesia; he had the crazy belief that they had a higher tolerance for pain—and he certainly didn’t respect them as autonomous patients. What’s even more absurd is that this idea continues to exist in the medical community. In a 2016 study on racial bias in pain assessment, 12 percent of medical students surveyed thought that Black people have less sensitive nerve endings, and 58 percent believed Black people have thicker skin than white people.

Pain is pain. You know when something isn’t right; you know your threshold, and your voice of concern shouldn’t be ignored. Don’t let anyone downplay what you’re feeling physically; just try to stay consistent while explaining your symptoms until you feel heard. Whether it’s a routine checkup or an emergency situation, be upfront and honest. Don’t hold back any pertinent information, and don’t exaggerate hoping it’ll get you seen or treated faster. You want your medical team to have an accurate picture of what’s happening.

Lesson 2: Ask Questions and Get a Second Opinion

If there’s one thing I’m adamant about as a patient, it’s making sure to ask lots of questions. I mean it—the best way to advocate for yourself or a loved one is by not being afraid to ask for explanations about anything you don’t understand. Not sure what the reading means on the machines monitoring your pregnancy? Ask someone to explain each metric to you. Unsure of the risks when your child has to undergo a procedure that requires anesthesia? Speak up. Don’t just blindly agree because you’re talking to a doctor.

As someone with a chronic illness, I’ve always fallen under the “high-risk” category when it comes to my pregnancies. The OB during my most recent pregnancy insisted that we schedule a c-section rather than the VBAC (vaginal birth after cesarean) I wanted. I felt like I was getting “because I said so” responses at every appointment. (According to a study, Black women are more likely to be talked out of having a VBAC by doctors, despite evidence that it can decrease the risk of surgical complications and postpartum hemorrhages and even reduce death rate.)

I voiced my preference, questioned the risk factors and asked for a second opinion—because I was confident in my body and didn’t want another unnecessary surgery. At 37 weeks, I met with a maternal-fetal medicine doctor who said I was a great candidate for a VBAC and, thankfully, cosigned on moving forward with the procedure.

When it comes to your health, it’s just like we learned back in school: There’s no such thing as a dumb question. I have so much respect for medical professionals, but I won’t let their fancy degree or white coat intimidate me—and you shouldn’t either. It’s your body and you have the right to ask questions, provide input, seek out a second opinion or disagree altogether.

Lesson 3: Keep Good Records

Whatever you do, please make sure someone is taking notes—especially if it’s a prolonged hospital visit. It’s great to ask lots of questions, but you should also keep track of the responses, so you have a record of everything said and done (it’s often too much to remember). Use your cellphone notes program (you can later email yourself!), or go with good old pen and paper. It’s also important to make sure you’re in attendance to advocate for a loved one if they’re hospitalized, incapacitated or unable to record information on their own.

Here are a few important things to jot down before and during care:

  • Your family’s medical history
  • A list of any symptoms and their duration
  • Any allergies
  • Names of medications prescribed, dosage and how often they’re taken prior to arrival and during the visit
  • Names of doctors, nurses or assistants who are directly caring for you or your loved one
  • Any questions or issues that arise while in the ER or after being admitted

What’s more, take advantage of a healthcare system’s patient portal. It can be an awesome tool to help you stay informed with timely access to test results, lab work, scans and more. Review all online forms carefully and read through disclosures; you want to make sure you’re not waiving away any of your rights. It can be confusing, so consider having someone else look over paperwork as well. A second set of eyes can prove helpful in catching something you might have missed on your own.

Lesson 4: Have an Extra Set of Eyes and Ears Present

During my most recent pregnancy, I was induced at 38 weeks for a sudden onset of preeclampsia. Thankfully, I had my sister-friend and doula Tiffani of Kismet and Kemet there to support us as we welcomed our daughter earthside. While I’m typically diligent about taking notes and asking questions, laboring in an increasingly dangerous situation was overwhelming. Our doula made sure that my husband and I felt empowered along the way and encouraged us to ask questions (Is this medically necessary? What are the risks? Is our baby in distress?), so that we could make informed decisions without feeling pressured.

Ten days postpartum, I found myself back at the hospital with sepsis. I ended up in the emergency room alone due to COVID-19 restrictions, and it was definitely a very different experience. The ER is an extremely fast-paced, high-pressure environment, and it can be intense and scary. If you can avoid it, don’t go alone. Having someone by your side as an extra set of eyes and ears can be incredibly beneficial. Having to answer tons of questions when you’re in pain, as doctors poke and prod and spew medical jargon, can feel downright daunting. Having someone there to think of things to say, ask questions that may have slipped your mind or tend to your needs while nurses are busy is so immeasurably helpful. It’s natural to feel anxious, nervous and unfocused—so you may just want someone there to hold your hand.

I can’t count the number of times I’ve called out from behind hospital curtains, doubled over in pain and needing help. Sometimes nurses and doctors didn’t hear me. Other times they raised the “give-me-a-minute” finger. Too much time would go by before they’d check on me. It was an immense relief to have my husband or mom walk over to the nurses’ station and get help or remove an IV bag from the pole so that I could get up and pee.

It’s worth noting that there are also typically patient advocates staffed within a hospital to help with your needs or address your complaints. They’re great to connect with for little things, like if you need something as simple as a phone charger to call family members from the emergency room.

Furthermore, if you ever feel discriminated against or disrespected, they’re the perfect point of contact to discuss concerns. You can voice any issues you have, such as receiving medication in a more timely manner, needing a better explanation of a procedure or feeling like you’re being discharged too early.

Lesson 5: Do Your Own Research

No, your Google search doesn’t supersede a doctor’s medical training. Still, the more informed you are, the better suited you’ll be to ask the right questions and voice your own concerns.

Once, I ended up being admitted into the hospital due to an exacerbated Crohn’s flare-up. I had questions about a new medication being prescribed to help me. My own doctor was on vacation, and the gastroenterologist on staff wasn’t well-versed in my form of Crohn’s; they just assumed I suffered from frequent bouts of diarrhea.

My white blood cell count was elevated—an indication of why I was flaring—but she failed to ask about my personal history with the disease. Before we even had a single conversation, she put in an order for a medication she assumed would alleviate my pain. Thankfully, I did my homework first and explained why her choice made me uneasy. Admittedly, I always wonder if I’m going to be perceived as the “angry Black woman” just for asserting myself. And, in truth, the more questions I asked, the more her body language changed. I could tell she felt threatened that I was challenging her authority; instead of listening, she kept speaking over me. But, had she been more patient and receptive, she would have realized that my Crohn’s lies on the spectrum where I can go weeks without having a bowel movement. The particular medication in question would have made things worse by making me more blocked and constipated.

Lesson 6: Give Feedback

There’s no greater feeling than being released from the hospital; and it’s even more joyous when it means you’re bringing home a sweet, new baby. Once you’ve been cleared, carefully review release documents and make sure you understand the next steps. If there’s any confusion on what to do or which doctor to follow up with (or when and where!), don’t leave until you get answers.

After most hospital stays, you’ll be sent a survey to fill out about the quality of care received. Don’t toss that in the trash, as I’ve regrettably done in the past; they offer a great way to not only applaud an amazing team of porters, nurses, physician assistants and doctors, but to also document care you found disappointing. It’s a way to hold hospital staff and healthcare systems accountable. It may seem like this information goes nowhere, but it does help organizations take a closer look at providers and evaluate specific scenarios where they’ve fallen short or made potentially life-threatening decisions.

For labor and delivery, you can take accountability a step further and check out the Irth app; it gives Black women a channel to share their prenatal, birth and postpartum care experiences for the benefit of other soon-to-be moms. You can write or read reviews and check ratings for doctors and hospitals.

It’s a fact that Black women are three times more likely to die during childbirth)—and that implicit bias plays a huge role in their mistreatment or undertreatment. But if we learn how to effectively advocate for ourselves during a medical situation, we can help incite change. Lives are at stake.

About the author:

Danielle Wilson is a lifestyle and entertainment writer and event producer who loves bringing people together through relatable storytelling and impactful, community-focused events. She is passionate about Black maternal health, family wellness and advocating for those with chronic illnesses. She shares snippets of her NYC adventures, raising three Black unicorns with her childhood crush at Dellahsjubilation.com. Follow her on Instagram.

Please note: The Bump and the materials and information it contains are not intended to, and do not constitute, medical or other health advice or diagnosis and should not be used as such. You should always consult with a qualified physician or health professional about your specific circumstances.

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