Black Women Advocating for Themselves in Healthcare

Not enough is said about the inequities experienced by Black women in this country or about how subtle and nuanced these inequities can be. Despite the joy we harness and dole out, the toll of living as a Black woman can be tremendous. It's evident how this weight can strain our mental health, but we also can't divorce the effects these stresses have on the body. Perhaps nowhere are these inequities more understated or more harmful than in healthcare.

I've always been a relatively health-conscious individual. I'm not sure if it's because I grew up an athlete or learned to prioritize health from my community, but I've always felt in tune with my body. In the summer of 2019, I reached a point where I felt powerful and confident in my athletic abilities. I was frequenting the gym, lifting often, and kept it all in balance with yoga. My focus and trajectory were clear: I was to meet my fitness goals! That is until everything came to a screeching halt.

What started as a twinge in my back quickly turned into debilitating pain. The only relief I felt was lying down. After numerous tests and exhausting visits to the doctor, I was told that "everything looked normal."

The doctor's official diagnosis for my pain was a simple neck strain. It was a gut punch because though I didn't have the tools to diagnose myself, I knew well that whatever was happening in my body was not merely a strain. I couldn't function. I lost almost all ability to move, which made me bedridden and limited my capacity to work, enjoy nature, and challenged my mental health in ways I couldn't prepare for. I'm not in the medical field, I know that. But it didn't sound or feel right to me to accept that a simple strain, or even a serious one, could so drastically alter my capacity to live my life fully.

Taking my health into my own hands—an all too common occurrence for us.

Not settling for a lukewarm diagnosis, I revisited my test results to see if I could spot any abnormalities. Was there anything in these images and data that could explain what to do next? Sure enough, one sentence stuck out, a clue. In short, the sentence, very passively, identified another possible cause for my pain, as if unimportant for me to know. Specifically, it mentioned a possible CSF leak, what I later came to understand, all too intimately, as a Cerebrospinal Fluid Leak. Googling the symptoms, I sat in shock and awe because I immediately recognized that this was what my body was going through. Somehow, my cerebrospinal fluid was leaking into my body, and I had every single one of the unique symptoms that confirmed this.

As any millennial would, I opened up Instagram and quickly searched "#csfleak," as if to both confirm what I already knew and to feel less alone in my pain and frustration. To my amazement, I found a lot of posts and content related to the same issues I was having. I reached out to a few people, started exploratory conversations, and was eventually led to the official Facebook group for CSF issues. It was there I received an outpouring of support and insight around how to find the proper resources, such as a treatment center and a doctor who took the time to understand and affirm my pain. In the weeds of online forums and support groups, I learned that my journey back to normalcy would be lengthy.

Thankfully, the neurologist I was referred to became an excellent source of support. They listened, took the time to hear my story and process my pain. From there, fortunately, recovery was relatively smooth, receiving treatment from the best of the best. Despite the original misdiagnosis, I was lucky, or more aptly privileged, to be in a position of healing. I had the familial support and financial means to pursue answers wholeheartedly, take all the tests, set the appointments, and receive the treatments I'd eventually need. But sadly, that's not the case for most people that need specialized help, certainly not most Black women. And beyond conversations of resources and privilege, medical professionals must listen to and trust the words of Black women. They must trust that Black women understand their pain, that their concerns are valid, and that the perception of strength does not undermine their justification or desire for due medical diligence.

What are Black women to do when the people who are supposed to care for us don't know how, or worse yet, don't take the time to learn? It happened to me, and without my belief in myself and my own medical research, I may have fallen through the cracks of our healthcare system.

Today, Black women are 3-4 times more likely to die from pregnancy-related causes than white women, regardless of income or education. As we wrap up Breast Cancer Awareness month, we must face the fact that Black women continue to be 40% more likely to die of breast cancer than white women. Studies also show that at any risk level, Black women are less likely than white women to undergo genetic testing meant to detect early signs of diseases, cancer, and illnesses, largely because physicians fail to recommend them (SimpleHealth). Unfortunately, my case is not an outlier. I am one of many Black women who feel pain but never feel seen. And when compounded with the traumas of racism, sexism, and a host of other issues, our mental and emotional health is at risk, too.

We deserve to feel safe, heard and medically protected.

I'm back to about 85% of my baseline health, and although I have no idea if I will plateau or continue to improve, I'm grateful to have my life back. But as elated as I am to sit here today, seemingly lightyears better than I was mere years and months ago, it pains me to know that so many other Black women aren't able to write out their stories of success and healing. Suppose I had taken the initial misdiagnosis and passivity of medical concern at face value. My outcomes may have been different, as they are for tens of thousands of Black women seeking support each year.

I fought for answers, and as a Black woman dealing with a medical mystery, I frankly had no other choice. Too often, we're all we have. There's great power in knowing yourself, your mind, and your body. You know how your body typically feels when you get up, go to bed, or do anything in between. So, when something doesn't feel right, trust your instincts and fight for the clarity you deserve. And if you feel alone like I did, here are a few guiding questions to consider to ensure you're doing right by yourself:

1. Am I being listened to?

We're often sitting in the doctor's office repeating ourselves only to realize we're not being heard. There's a stark difference between listening to understand and listening with the intent to respond. Many medical professionals want to react quickly; make sure they understand you first. You should leave your appointment with the confidence that your provider is doing all they can to figure out what's going on.

2. Do I believe in my doctor’s ability to handle my situation?

You may find yourself sitting on an examination table and wonder whether or not your doctor is qualified to tackle your case or whether or not you even feel comfortable with them at the helm. If you're having doubts, dig deeper to explore why you feel that way, and if able, seek out alternatives that bring you comfort (see next question).

3. Is it time for a second opinion?

Do not cause harm to yourself to protect a physician's feelings or by silencing your intuition. Suppose you're beginning to feel like you're not getting the proper treatment, or your medical professional feels ill-equipped to support you (emotionally, too). It is your duty to yourself to seek out other options, as time and capacities permit—your well-being on the line, not your doctors. Since the data reveals massive internal biases against Black people in medicine, you owe it to yourself to seek out the best and most accessible providers for you.

Regardless of the myriad of outside factors we face as Black women, we owe it to ourselves to show up as boldly and as fiercely for ourselves as possible. But we also deserve to feel safe, heard, and medically protected when we're in too much pain and fatigue to be fierce. We are our biggest advocates. We are our most sacred protectors.