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Your Guide to Preventing Migraines

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SOCIAL VOICES
Navigating the Healthcare System as a Black Woman with Migraine

Jaime Sanders_Navigating the Healthcare System as a Black Woman with Migraine

When I was around 7 or 8 years old, my father, who was born and raised in Jamaica, sat down with me and my two older sisters on our front porch. He told us something that has stuck with me since that day. My father said that my sisters and I were double minorities: Black and female. We would have to work three times as hard just to be seen as equal to men and our white counterparts. I didn’t quite understand at the time what it meant but I felt its impact.

Throughout my childhood, my parents would constantly tell us stories about their experiences being Black in America. My mother and her two older siblings were the only Black children in their Bronx elementary school. My father, on the other hand, did not know he was a Black man until he arrived in Brooklyn in the 1970s. Up until then, he was a Jamaican. No matter what you look like in Jamaica, everyone is a Jamaican. In America, my father was reduced to his skin color and the oppression and racial bias that comes with it.

Growing up in Queens, I was surrounded by a melting pot of cultures. We experienced a lot of diversity and exposure to different people, foods, and traditions. This was also true for our trips to the doctor. My father was the Chief Financial Officer and Vice President of Morris Heights Health Center, a non-profit health center in the Bronx. In that center, I saw a rainbow of people from the janitorial and administrative staff to all the healthcare professionals. It was the mission of leadership to create a place that was representative of the community it served and they were very successful in achieving that.

The doctors, nurses, and even my dentist were People of Color. I thought it was normal to be treated by people that looked like me. It wasn’t until I moved out of that community system and into the “commercial” healthcare system that I learned it wasn’t normal. I was diagnosed with migraine as an eight-year-old, but when my migraine became more severe and chronic in my twenties, I became a much more active navigator in the medical system. There were more doctor appointments and specialist visits to help control my disease. My attacks felt (and still feel) like a hot poker is being drilled through my left eye and out the back of my head, alongside nausea, vomiting, and sensitivity to light, sound, and odors. Eventually, my migraine became a daily experience and was labeled as intractable (hard to control) and refractory (resistant to treatment).

All in my head

I began to experience a shift in how I was treated by healthcare professionals. My pain was dismissed; I was told, as many women are, that it must be “all in my head” (although of course, because it’s migraine pain, it literally was affecting my head). As a Black woman, I realized my doctors believed my pain did not exist because they carried the common, racist misperception that we do not feel pain. My father’s words took on a completely different meaning to me. What I was experiencing was implicit or unconscious bias, which refers to the unconscious attitudes or preconceptions that influence our thinking, behaviors, and decisions.

My frustration drove me to dive into the research. I learned that, in a 2016 study Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source of 222 white medical students and residents, about 50% held false beliefs about biological differences between Black people and white people, including that Black people have thicker skin and less sensitive nerve endings, and thus feel less pain than white people. It should go without saying, but just in case: this is not true. This racial bias in pain perception results in inadequate pain treatment recommendations. When I learned of this study, it brought my mind back to the delivery room after I gave birth to my daughter in 1998. I needed stitches to fix a tear and the doctor proceeded without numbing the area first. I screamed out in pain and he asked, surprised, “You can feel that?!”

Needless to say, I was stunned at his response and I told him I could feel him putting the needle into my skin. That was my first experience with racial bias. Since then, I have experienced many instances of implicit and racial bias, especially in the treatment of my migraine disease.

I had to prove my pain was real

Whenever I need to go to urgent care or the emergency room, I always carry my “migraine binder.” It contains all of my medical information and most importantly, a written protocol from my headache specialist that explains what treatments I need if I wind up requiring emergency acute treatment. I can’t trust that the doctor on call will give me the treatment I need without this information. During a particularly long migraine episode, I visited urgent care three times in 2 months and saw the same doctor each time. Of course, I had my binder with me. On the third visit, the doctor came into the room and instead of greeting me, she called me “the binder.” She proceeded to ask me if I was doing everything I should to prevent being in urgent care so much, forcing me to go through a laundry list of every doctor, treatment, complementary therapy, surgery, and medication I had tried. I had to prove my pain was real and that the treatment I needed was necessary. After I was finished, she snatched the protocol out of my hand and left the room in a huff. I was so angry and felt so dismissed. She had effectively medically gaslighted me.

My experience, unfortunately, is not rare. Many People of Color deal with racial and implicit bias in the healthcare system. It has affected me to the point where I have developed medical PTSD. Due to the trauma and anxiety of those experiences, I no longer seek emergency acute care for migraine. I constantly worry if I will be taken seriously or provided with adequate and empathetic care. My headache specialist has helped me build a toolkit that includes prescriptions for the treatment I would normally receive in those situations, so that I can administer them myself without the need to go to the ER.

These invisible barriers of perception, beliefs, and assumptions have only made managing an already highly stigmatized disease more challenging. It is hard enough having to live life with my highly stigmatized skin color.

My advice to you

It might seem tedious, but creating your own binder of information is like putting on a shield of armor. My migraine binder is an essential tool, and I recommend that anyone with migraine disease, particularly People of Color, keep one on hand. Advocating for yourself is a challenge, especially when you’re in pain and not getting help or relief. Finding the right doctor and medical team to advocate for and support you on your treatment journey is important as well. When I was able to see a headache specialist who truly cares about people living with migraine, everything changed. My previous neurologist had tried to manipulate me with false information to avoid providing treatment, and blamed me for still being in pain. I fired him immediately. Every person has the right to fire their doctor. No one should make you feel bad about having a disease that is not responding to treatment or for not getting better. The team I have now actively listens, asks for my input, and respects my choices. Your doctor is your advocate and your voice if or when you are unable to advocate for yourself. With a migraine binder, a loved one by your side, a headache specialist you trust, and any ounce of strength you can muster, work to get the care you need and deserve.

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  1. Hoffman, K. M., et al. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2022 Apr 26
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.