When I was a little girl, I was the type of kid who was constantly getting injured. From accidentally getting hit in the head with a bat during softball practice to falling off a log during an overly acrobatic game of tag, being rushed to the emergency room was routine growing up. My mom was hyper-vigilant about making sure that my health—as well as my sister’s—was a priority. So, even the slightest bump on the playground almost always meant we were headed straight for the doctor. While my sister had a paralyzing fear of doctors (especially needles), I never feared going to the doctor. I mostly associated the dentist and the pediatrician with balloons and nasty sugar-free candies, so—while I found them annoying—fear wasn’t my go-to reaction, whether it was for a check-up or yet another mishap.
During my junior year in high school, I started my first job at the local mall. The only thing I remember about my first day is that one moment I was standing up listening to a lecture on how to properly fold shirts and, then, the next moment I was laying on the floor surrounded by my new colleagues. Apparently, I’d lost consciousness and passed out in the middle of the store. A few hours later, my mom rushed me to the hospital and I was admitted with a severe kidney infection.
Unbeknownst to me, those days in the hospital were the beginning of a very complicated, twenty-year relationship between me and the medical-industrial complex.
During college and graduate school, I was athletic. I played flag football, ran in a marathon and worked out three-to-four times a week. Nevertheless, I was in and out of the hospital with extreme joint pain, kidney issues and a number of other unexplained symptoms. No matter how many doctors I went to—in a number of different states—nobody could figure out what was wrong with me. I was commonly accused of being a hypochondriac or just an attention-seeker. While the doctors who leveled these insults certainly hurt my feelings, I was clear that if we could just figure out what was going on, my experiences in hospitals would change. Surely, I thought, these doctors were only acting out of frustration because they couldn’t figure out what was going on with me.
After ten years of going in and out of the hospital, I finally caught my lucky break. After being unable to break my low-grade fever for three months, a doctor at the student care center became extremely invested in figuring out my case. She took ten years of my medical records and began to study them like a puzzle. Weeks later, she called me in for testing and within days she had an answer: I had lupus.
The story of my diagnosis is exceptionally common. On average it takes more than six years to be diagnosed with lupus. Most lupus patients report initially being misdiagnosed. In general, women are much more likely to be misdiagnosed and much less likely to have their pain believed by doctors. If you are African-American, you are even less likely to have your pain and symptoms believed.
But, back in 2010, I knew nothing about the stats or the dire state of emergency medicine for black women, in particular. In fact, I was relatively naïve. I believed that now that I had a confirmed diagnosis—and a medical team that was treating me—if I ever had a medical emergency again, the people who had sworn an oath to do no harm would make sure to uphold it.
After all, I had empirical proof that I wasn’t a hypochondriac…right? If only things were that simple.
When I finished graduate school and moved to the South for my first residential fellowship, my health began to rapidly decline. I went from 140 pounds to 110, I had to drop out of yoga teacher training due to debilitating constant joint pain and my lupus began to impact my heart. My trips to the emergency room became increasingly nightmarish. I would go in for an elevated heart rate and chest pain; the doctors would refuse to do even a basic work-up, let alone treat me for pain. They would take a look at my age (I was 27 at the time) and dismiss me outright.
They were convinced that I was simply there to seek drugs.
I became convinced that if I developed a strategy for entering the emergency room, perhaps I would be treated better. I would have my rheumatologist call ahead, I would dress as though I’d just been teaching class, I’d introduce myself as Dr. Doe. I even asked my mother to fly down from the Midwest to accompany me so that the doctors would see that I had a family. Nothing worked. I couldn’t convince the doctors to see past my youth, my womanhood and my black skin.
Two years later, I moved to the East Coast for my first assistant professor job and my health went further downhill. The first summer I was there, I was hospitalized almost every two weeks. My inflammatory markers were through the roof and were wreaking havoc on my stomach and my heart. I was diagnosed with pericarditis (inflammation around the heart), chronic sinus tachycardia (an inability to keep my heart rate at a normal level) and uncontrolled inflammation in my stomach.
Meanwhile, during hospital admissions, I had doctors blatantly call me a drug-seeker to my face. I had an administrator call hospital security during a meeting about my care because they were afraid my black family members would "act up." I was discharged from one hospital with a heart rate of 130. The doctors and nurses refused to listen to me when I cried hysterically from chest pain as they discharged me. When my family saw that I could barely walk out, they rushed me to a different hospital. The black nurse who did my intake thanked God they had the wherewithal to bring me there. I was hospitalized for eight days while the cardiologists struggled to bring my heart rate down. As the years went on, I continued to have one traumatic hospitalization experience after another.
Five years later, I’ve developed a complex and systematic approach to entering hospital emergency rooms. I will only go if someone from my medical team calls ahead. I have to be accompanied by a friend or a family member. I must be dressed in clean and professional clothes. The list goes on and on. But the reality is that these political tools of respectability can not and do not protect me. These days, we have managed to decrease my total number of hospitalizations per year from 24 to four.
I am blessed with good medical insurance and a fantastic medical team that advocates for me at every turn. But even still, it is rare that I can get through a hospital admission without being personally attacked by a doctor or a nurse who—despite my lengthy medical history—simply does not believe me when I describe my symptoms or my pain. After my second hip replacement in 2019, the night after the surgery, the overnight doctor did not believe me when I cried all night in pain. Our healthcare system is so broken that most hospitalists seem to be incapable—or perhaps just unwilling—to provide empathetic pain management and care to patients in marginalized bodies.
January of 2020 will be the tenth anniversary of my lupus diagnosis, and the twentieth anniversary of my very first hospitalization. You would think that after all of these years of experience in and out of patient care, I would feel confident about navigating the medical system. But, unfortunately, it is the opposite: I live in a constant state of terror that I will become so ill that a friend or family member will push me to go to the hospital because my symptoms can no longer be controlled at home. I can only hope that, one day, the medical care system will no longer be a place that I think of with complete fear and dread.