I'm a Black COVID Long-Hauler Who Wore My Credentials So Doctors Would Listen. They Didn’t.

Longstanding racial disparities in healthcare have only been exacerbated in the wake of the global pandemic.

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“Maybe you should wear your UCLA sweatshirt to your appointment. You have to wear something that will make them take you seriously.”

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That’s what my sister said to me on the morning of my seventh doctor’s visit to find out what was causing my debilitating symptoms, after having tested positive for COVID four weeks prior.

But that sweatshirt accomplished nothing.

By that point, I had been to an urgent care center, two emergency departments, a pulmonologist, a Primary Care Physician, and a post-COVID Care Clinic. I left each appointment feeling as if the doctors didn’t believe me. Every single one of these doctors asked if I had any history of anxiety, and treated me as if I was a hypochondriac.

I would describe how my body would betray me without any warning. I would tell these doctors how several times a week I am overtaken by indescribable fatigue. I couldn’t hold my head up, open my eyes, or move my limbs. My mother had to hold my head to stabilize me while my sister managed to give me medicine that didn’t quite provide relief. My head continued to spin and my chest was compressed with pain I can’t put into words. My 9-year-old daughter watched all this with fear in her eyes.

I am a Black woman and a COVID long-hauler. I have suffered from symptoms that managed to evade all labs and screenings. Through this ordeal, I couldn’t help but wonder if other Black and women of color have experienced the same dismissal of their symptoms. I know based on research that women of color seeking healthcare face gaslighting and dismissal of their symptoms by doctors at higher rates than men. I also know that this is no different from how society generally treats the toll of racism on our physical and emotional wellbeing —with neglect, denial, and inaction.

According to a few studies, women wait an average of 16 minutes longer for pain medication in emergency rooms than men. Furthermore, women are often told their symptoms are a result of anxiety and stress, frequently leading to undiagnosed and untreated chronic illnesses.

A recent study that looked at disparities in mortality rates from COVID-19 across different racial groups found that Black women were dying at a rate three times the corresponding mortality rates for white and Asian men and at an exceedingly higher rate than any other racial or gender group, with the exception of Black men.

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With each appointment, I had a new wave of optimism that I would finally see a doctor who would take an interest in figuring out why I was having chest pain and random headaches or why I couldn’t walk a few feet to the bathroom without getting winded.

I was most excited to get an appointment at a Brooklyn post-COVID care clinic; but that hope quickly dissipated. After a rushed visit, the doctor dismissed my extreme fatigue and increased heart rate as “happening to everyone.” When I told her that I didn’t think I could follow her recommendation to increase my physical activity by a few minutes per day, because I couldn’t even take a shower without struggling to breathe, she said, “Well, I’m not telling you to run a marathon.” She ended the visit by telling me there was nothing she could do and that she was mainly interested in collecting data from patients.

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I left that appointment in tears, defeated and hopeless that there would be no no end in sight to the constant pain I felt. Meanwhile, I was no longer able to perform the basic activities of daily life. I couldn’t take care of my 9-year-old daughter, give her a bath, help her with homework, take her to socially distanced playdates or do any of the outdoor activities we both love.

I’ve had to use a wheelchair to conserve energy. I’ve become completely dependent on my family for care both for myself and my daughter.

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In the weeks since I first called Emergency Medical Services due to severe chest pain, every doctor I saw gave me a diagnosis and advice that didn’t match my symptoms. One E.R. doctor offered to give me Mylanta because he thought the chest pain that radiated to my left arm could have been stomach acid. Another doctor reluctantly agreed to a lung scan that showed severe inflammation and finally agreed to admit me for overnight observation, only to send me home the next day with more Tylenol.  

I finally came to terms with the fact that this was my new normal, at least for the next several months. I realized that part of the healing process was understanding my new limitations. But what I will never come to terms with is knowing that the physical and emotional challenges of my illness were further complicated by not being heard by doctors who did not believe in the severity of my symptoms as I described them. Despite what I know of racial health disparities and implicit bias in healthcare, I still continued to have blind faith in these doctors’ ability to help me or at a minimum to listen and to believe what I was telling them. Instead, my symptoms were dismissed and minimized.

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It took eight doctors before I finally found one who took me seriously and started a course of treatment that would help improve my health over time. I left that appointment overwhelmed with emotion, but this time mainly out of sheer relief and happiness.

But commingled with the solace I felt in that moment was also fury at the doctors who refused to listen to me. I hated the fact that I had to wear that sweatshirt or remember to gratuitously share information about my occupation and where I worked, all in a desperate attempt to be taken seriously when my life was hanging in the balance. I hated having to question if this would have been the case had I been white, knowing the answer all too well.

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Semhar Fisseha is a Senior Administrator of a department in a large NYC-based hospital. She lives in Brooklyn, NY with her 9-year-old daughter.

DISCUSSION

By
TrumpsTinyHands

Sorry this has been such a shit-show for you. The double-shitty part is that a patient needs to advocate for themselves when they have no fight in them and mostly just want to be in bed.

The truth is —even without the racial bias— doctors are supposed to see 6 to 10 patients an hour, and when someone shows up who is a puzzle, their brains glaze over and they are start to think about what to suggest so that they can get on to the next patient who they can diagnose and treat quickly. When they get home from work, they will likely have 2-4 hours of notes to type into the system.

Keep asking, keep pushing. Be insistent, be polite, be specific. Keep telling them.... something is not right. I used to do <some specific thing>, now my max is <some specific thing>. Unless the truth of your situation is undeniable, you are going to have trouble getting them to get out of “when is my next patient” mode. Also, if you say things like “I need to get this disease behind me so I can <do whatever>. When I try to <do whatever> now, I <be specific what happens>.” Expressions of goals and desires are a sign that you are mentally healthy but physically ill. Again, sucks that a patient has to dress properly and speak in direct, assertive, strategic statements to get proper care, but that is the medical conveyor belt that we are living with right now, and you need to get from the “quick fix” line into the “serious attention” line. Your PCP doesn’t have time to fix you, and you need to find the doctor that does.

Not sure where you live, but if there is a medical school/teaching hospital near you (i.e. Harvard Medical School/Mass General Hospital) do a little on-line research on well regarded infectious disease doctors in that hospital. Then ask your doctor for a referral to that doctor (or just go yourself if insurance allows). Infectious disease doctors solve puzzles as a specialty, and are probably most likely to find the specialty that will get you to your best self. On line patient reviews will help you find a doc that makes time.

I have been dealing with my own long-haul disease. About five different doctors ran their tests, saw nothing, then suggested either anti-depressants or a psychiatric consult. It took me three years to get to see a doctor who actually believed me and not their inconclusive lab work. I never used to get frustrated and give up, but I gave up twice in those three years.

Sending love, support and sympathy your way.