How Does Migraine Affect the Black Community Differently?
by Courtney White, MD
Neurologist/Headache Specialist, Jefferson Hospital
“I’ve had headaches since I was in middle school. I just thought all young girls get them.”
I often remember my patient saying this to me when I diagnosed her with chronic migraine, a disease that is well known to be not just a headache. Migraine is a spectrum of neurological dysfunction for which headache is one of the most common features. It is a neurobiological disease that is likely of a genetic basis, and can lead to symptoms of light and sound sensitivity, nausea and vomiting, dizziness, imbalance, mental cloudiness, even weakness and numbness or temporary inability to speak. It is so much more than a headache. And, no, it’s not something that all young girls just get and deal with. This is a debilitating disease and requires appropriate diagnosis and management to help improve quality of life. My job as a headache specialist is to provide that education and explain how serious this disease is, so that people can advocate for themselves in a world that stigmatizes migraine as “just a headache.”
It is of importance to note that this patient happened to be a Black woman. While migraine does not discriminate by race, it has always been marketed as a “white, middle aged woman” disease. So why would she think her symptoms are due to migraine? This branding leaves out other groups who would benefit from proper diagnosis.
In a survey of people who described their symptoms, the rate of people with the diagnostic criteria for migraine was equal amongst all groups. However, Black and other minoritized groups were less likely to actually have an official diagnosis of migraine made by a healthcare provider1. Without the appropriate diagnosis, you do not get the appropriate treatment, management and accommodations you need to live your best life. That is why it continues to be thought as a small, annoying thing that will go away if you try hard enough, rather than a neurobiological disease that requires appropriate treatment.
So if minoritized individuals are not being diagnosed and therefore are not being treated, what can I do as a Black physician and a headache specialist who also happens to live with migraine? Well, it comes down to advocacy. My form of advocacy is education. Letting patients and providers alike know about this disease and how many varied options there are to treating it. It equips people with the power to seek out their own treatment and management. It changes the conversation around headache disorders and it diminishes the stigma of the disease. Advocacy can be from just telling people that you have migraine and what you experience all the way to talking with legislative bodies to ask for more research funding for better treatments, perhaps maybe a cure. Advocacy can help teach others that their symptoms may need treatment and it is not something that is akin to a “regular old headache” that all people deal with.
We need more advocates and we need those advocates be as diverse as the population of people living with the disease, because the disease is not the same for every person. One of my favorite parts of being a headache specialist is the variability in treatment of migraine and other headache disorders. Every person is different, as is their presentation of disease. Again, migraine is a spectrum, and everyone experiences it differently. So, naturally, their treatment should be specialized and unique to their own symptoms, goals, and needs. That is why it is also important to understand that a treatment that is more beneficial for one person may not be so for another.
Commonly, people say, “Your migraine will get better if you manage your stress.” Yes, there are things I can do to manage myself such as organize my to-do list, learn to mindfulness meditation and relaxation techniques, or even restructure my schedule. However, no amount of deep breathing is going to change the fact that every time I drive past a police car, I’m looking in my rearview window and wondering if they are going to follow me. No to-do list will ever allow me to fully remove the burden of microagressions in living in a world where my worth is seen as lower than others because I am a Black woman. No schedule has the time, resources, and support to make sure migraine research includes people of all different backgrounds. Unless we start seeing ourselves in the face of the disease, our symptoms and disabilities are not going to be recognized. We need people of different experiences of the world to be able to openly discuss the unique challenges they face in addition to living with migraine and other headache disorders.
The migraine advocacy world needs a population that reflects the diversity of the population that is affected by migraine and other headache disorders. We all need a seat at the table so that our voices can be heard and changes can be made that improve everyone’s lives. Migraine is as diverse as the people who experience the condition and we can’t have just a small monolithic group represent this diverse population. Start with learning about the disease. Then learn how tell others about it. Find a provider who understands migraine and can diagnose you appropriately. And then tell others, “I have migraine. It is a genetic, neurological disease that causes various symptoms that affect me every day. It is not just a headache and I am not going to just deal with it.”
1Silberstein S, Loder E, Diamond S, et al. Probable migraine in the United States: results of the American Migraine Prevalence and Prevention (AMPP) study. Cephalalgia. 2007;27(3):220-229. doi:10.1111/j.1468-2982.2006.01275.x
Carrie G and Hemiplegic Migraine is a story written and told by Carrie G and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is…
Alexis Z’s advocacy story is written and told by Alexis and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that…
What is the Advocacy Stories project? The Miles for Migraine Advocacy Stories project highlights your everyday advocacy moments, interactions, and experiences. There are many different ways that health advocacy shows up as individuals advocate for themselves and others in everyday encounters. We want to share and amplify these stories. What is advocacy? Advocacy is an…