Diversity, equity, and inclusion in migraine disease

By Jamie Sanders

Throughout my years living with migraine, I have been confronted with many obstacles. The biggest challenge, by far, is living with a highly stigmatized disease and mental illness while also being a woman of color. I often find myself among similar groups of people being the sole voice of populations who are left out of conversations about stigma, access barriers, or availability of treatments and specialists.

I had undiagnosed abdominal migraine at 2 years old, and my first migraine attack at 8. At 27, I was diagnosed with chronic migraine. Prior to starting my blog, The Migraine Diva, in 2011, I was not aware of any other people of color who lived with migraine, depression, anxiety, or fibromyalgia. Talking about one’s health, especially mental health, is rarely encouraged in black families. It became important to me to change the conversation and help others who grew up in similar cultures feel safe in sharing their pain stories.

Advocating for my own health empowered me to make sure that my voice was heard. But getting to that point took a lot of time, disappointment, disrespect, and being dismissed. When I was experiencing more frequent and severe migraine attacks, I was a young black mother. Women are already dismissed when it comes to chronic pain—as a woman of color, my concerns or questions were often viewed as aggressive or difficult.

None of my physicians were people of color. I rarely saw anybody who looked like me in the waiting room. I certainly didn’t see myself in any of the commercials or print ads about migraine. And yet I am blessed with decent health insurance and access to most available treatments. I can’t help but think about all of the underserved populations living with the same disease: What obstacles do they face? Does anyone care enough to help them?

There is more than one narrative when it comes to migraine: It affects all races, socioeconomic backgrounds, and cultures. There are entire communities of people—the indigent poor, LGBTQ community, the incarcerated, people of color, non-English speakers—who lack health equity.
Understanding this disparity has driven me to do something more. I want to be a voice to elevate and validate their experiences. My goal is to create an organization to help provide access to adequate and affordable health care for all underserved populations across the United States living with migraine, headache and cluster disease, and mental illness.

This may seem like a big undertaking, and it probably is. However, it is necessary that we reach out to help the people hit hardest by health disparity. It is my hope that those see the importance of this endeavor and are willing to do the work to make health care a right and not a luxury in this country. •

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Jaime Sanders is the author of the award-winning blog The Migraine Diva. She is a member of CHAMP (Coalition For Headache And Migraine Patients), and the Headache and Migraine Policy Forum. Jaime works with the Society for Women’s Health Research Interdisciplinary Migraine Network and sits on the Patient Leadership Council with the National Headache Foundation.