Being a Black woman living with chronic daily migraine for more than 14 years has exhausted me. Having to traverse a system that is set up to fail me repeatedly withers me down to wanting to give up. The number of times I had to fight for the care I deserve is disheartening and sad. My anxiety has suffered several blows from worrying extensively about how I will be treated by a physician. Is someone going to listen to me? Will they honor my journey? Will they believe my pain is real? Or will I be blamed for why I’m still in pain?
Implicit bias toward patients who are Black, Indigenous and people of color (BIPOC) creates an unsafe environment within the healthcare system. If you are wondering how a healthcare professional’s unconscious opinions or stereotypes about BIPOC cause harm, I’ll explain my experiences. My retelling of these experiences brings that trauma back up and creates a heavy feeling of sadness for me.
Growing up I had not truly encountered racism — at least not overtly, except for once. I remember when my father and I were waiting to be seated at a restaurant on Long Island. The hostess ignored us, seating only the white patrons who entered the establishment. At the time, I was 7 or 8 years old and didn’t understand what was happening. My father grabbed my hand and we left. He was visibly upset. I vaguely remember him saying something about them not wanting us there because we are Black. The concept of being treated differently because we are of different skin colors was foreign to me.
That lives as a vague memory in my mind, but the trauma of that experience subconsciously informs how I react to acts of bias and racism. My father never got angry, and he held onto his dignity. That was a powerful example of how to react in the face of disrespect and dismissiveness. It’s funny how events from the past foreshadow the future. It never dawned on me that I would encounter racism while navigating the healthcare system; that experience with my father prepared me.
My migraine disease has been dismissed more times than I can count. I know that this is an enigma for anyone who lives with migraine. What makes it different for me is that I carry the weight of being a person of color. I navigate life knowing that people will always see my skin color before they even consider seeing me. Being Black means that I stick out in white spaces where I may not always be welcomed. It means that I must be mentally strong enough to jump over invisible hurdles.
Implicit bias forces me to show up to the emergency room or urgent care looking polished — hair did neatly, a little mascara and dressed appropriately. I do this to bypass anyone’s unconscious stereotype they may have about how Black people look and dress. If I show up looking how I feel and stay in my pajamas and hair unkempt, anyone treating me may assume I am low-income and uneducated. Mental hurdle number one has hopefully been jumped successfully. Mental hurdle number two is to be cautious about how I speak. It is important to sound intelligent and educated, but not come across as a know-it-all or an uppity Negro.
I tend to be more educated about my disease than some of the healthcare professionals who oversee treating me in the ER or urgent care. Whenever I try to explain that I am a patient advocate in the headache and migraine community, I get overtalked or cut off. When I provide the written protocol signed by my headache specialist that contains a synopsis of my history with migraine and the medications necessary to break my migraine attack, instead of seeing it as a legitimate and essential treatment, the focus is the number of medications listed. I am then treated as a drug seeker and liberties are taken to alter my protocol. I am effectively undertreated and given subpar care.
Other times I am forced to go through my entire history of medications, treatments, doctors, surgeries and alternative therapies such as massage, acupuncture and chiropractic adjustments after being medically gaslit by doctors who question the validity of my disease. Medical gaslighting is a sort of emotional abuse in which the healthcare professional continuously disputes the facts and the patient’s personal experience, often leading to self-doubt in the patient. A neurologist I was seeing blatantly said I am the reason why I am still in pain. He said that I rely on medications too much and that all his other migraine patients feel better through making lifestyle changes. He got fired that day.
How I respond to these horrible experiences is important. Remember my father and how he exhibited extreme grace in the face of horrible treatment? I, too, must show grace and patience. If I get upset, yell or show any dissatisfaction, I am seen as the stereotypical angry Black woman. I must maintain calm to stand up for myself in a respectable manner — even though I was disrespected. You catch more bees with honey than vinegar. Inside, I am hurt, angry, frustrated, sad and exhausted. On the outside, I speak calmly and clearly to avoid being dismissed any further. Still, the damage is done.
I often feel I may not deserve the treatments I desperately need because I am made to feel that migraine is not a severe issue. The level of health care I receive is less equitable than my white counterparts. I no longer seek acute medical care for severe migraine attacks. I administer my protocol at home because I suffer from severe medical PTSD. The intense anxiety and fear I experience at the emergency room or urgent care are not worth the possibility of getting my protocol as it was written.
Instances of implicit and racial bias are way too common and result in receiving inferior health care. We all carry biases, and it isn’t always easy to look inward to identify what they are and how they inform our attitudes toward racial groups. Structural factors that work against people of color attribute to why they are sicker than their white counterparts and have higher morbidity and mortality rates. In order to eradicate the inequities that historically disenfranchised groups face, we need to come to terms with how stereotypes and false beliefs contribute to why some physicians choose to opt-out of providing racial and ethnic populations with the most effective, life-saving treatments.
I am extremely grateful to my white allies in this community who are doing the work to create more equitable, accessible and inclusive spaces in which we can thrive. Without their involvement and initiative to push this forward, progress would be much slower. People of color who share their migraine journey ask for others to really listen when we speak about these traumas. When we tell our stories, we do not invalidate anyone else’s. Our stories highlight that we face challenges that our white counterparts never had to experience.
It is important to understand that the systems in which we live were never meant for us, but instead to hold us back. These structures are not here to see us succeed. On this Juneteenth, take a pause and think about how invisible barriers such as implicit and racial bias and the marginalization of people of color creates a toxic, damaging and unsafe place in the healthcare system.
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