What BIPOC Advocates Want You to Know About Migraine Care

What BIPOC Advocates Want You to Know About Migraine Care

Racial disparities in migraine start with People of Color being less likely to seek care and receiving lower rates of diagnosis.
Implicit bias, a lack of access to healthcare, and cultural issues all contribute to healthcare disparities.
Self-education and knowledge about your rights as a patient can help improve your outcomes.
When Sarah Reneé Shaw had her first migraine attack, with stabbing pain and nausea, her white primary care physician dismissed her symptoms as stress from a new job.
Kelsey Feng had debilitating headaches from age 16 but didn’t receive a diagnosis for another 8 years. “Part of that was not knowing what a migraine was,” they said, “and being around people who said, ‘You’re just being dramatic,’ or ‘It’s not that bad.’”
For Shaw and Feng, subpar treatment is interwoven with race, class, and gender. People from Black, Indigenous, or other Communities of Color (BIPOC) living with the throbbing pain and nausea of migraine are vastly underrecognized, underdiagnosed, and undertreated in the United States compared to their white counterparts.
“For people of color, migraine is often seen as ‘just a headache,’” said social worker Krystal Kavita Jagoo, MSW, who has covered health equity as a journalist. “But it’s debilitating.”
And physicians can’t treat the condition unless they’re willing to acknowledge someone’s pain, she explained.
Jagoo was speaking at a roundtable convened by Healthline to look at how racism and cultural norms impact migraine care. The five participants talked about why the system needs to change and how self-advocacy can make a difference in their treatment and quality of life.
Health inequities
Racial disparities in migraine start with People of Color being less likely to seek care.
Only 46 percent of Black people living with migraine seek help compared with 72 percent of white people, according to the American Migraine Foundation (AMF). That may be due to:
lack of healthcare access
mistrust of doctors
lack of representation among healthcare professionals
The result is fewer People of Color getting diagnosed: Just 40 percent of Black people with symptoms get a migraine diagnosis versus 70 percent of white people, the AMF reports.
Hispanic people are 50 percent less likely to get a migraine diagnosis, and Asian people have a migraine diagnosis rate of just 9.2 percent, possibly reflecting vast underdiagnosis.
“The fact that I can’t even find a statistic about how many of us actually experience it says a lot.”
— Kelsey Feng
Shaw, who is Black, noticed different treatment from doctors when her white father advocated for her as a child compared to when she attended appointments on her own as an adult. Dismissive doctors kept her from seeking care for migraine.
“You don’t want to go to the doctor, because if the tests come back negative, people will say you’re making stuff up,” she explained.
Ultimately, an inquisitive pharmacist helped put two and two together, giving Shaw the language and tools to seek care for migraine. Today, Shaw is a BIPOC patient advocate and community outreach manager for Global Healthy Living Foundation .
When Feng, a patient advocate, tried to research migraine in Asian American families, they found the studies to be over a decade or two old.
“The fact that I can’t even find a statistic about how many of us actually experience it says a lot,” they said. “I feel like there’s bias involved with that.”
A
in the journal Headache suggests that lower rates of migraine among People of Color may actually just reflect lower rates of diagnosis. And without an official diagnosis, people can’t get migraine treatment.
The reasons for the gap in diagnosis are both subconscious and structural.
Physician bias
2017 study
in BMC Medical Ethics showed that high rates of implicit bias among healthcare professionals led to Black people receiving poorer care than white people.
Per the AMF , only 14 percent of Black people with migraine are prescribed medication for acute migraine compared to 37 percent of white people.
When Shaw first complained of headaches, her physician prescribed anti-anxiety medication. Another physician said she was too young to possibly be in so much pain.
During an appointment for her migraine treatment — 31 Botox injections in the face and neck — one of the nurses commented that she didn’t cry like other patients.
Shaw is used to minimizing her own pain and thought, “Are you saying that because I’m Black?”
After 4 weeks of nonstop migraine, Qasim Amin Nathari, an author, went to the emergency room (ER), where he was kept waiting for 8 hours under bright lights.
When he was finally seen, he mentioned the drug combination that had worked for him in the past. He received a stern “We don’t do that here,” recalled Nathari, an activist in both the Muslim and migraine communities and a former executive in Cory Booker’s mayoral office.
“My radar goes up: Is this a Black thing?” he said. “It was two white doctors. Maybe they had a problem with a Black man trying to tell them how to do their job.”
The medication the ER physician ended up offering? An over-the-counter pain reliever that Nathari already had at home.
Nathari is used to being the only Black man in migraine advocacy circles, a space seemingly dominated by middle-aged white women.
Through the Black Men Have Migraine Too podcast, he’s made it his mission to raise awareness of migraine among people like himself, a group with the lowest rates of treatment for headache-related conditions, according to a 2021 study .
Lack of education among physicians about the condition
A
2020 study
in the journal Headache noted that although more than half of migraine visits take place at primary care offices, many family doctors receive little formal education about headache medicine.
Only 28 percent were familiar with the American Academy of Neurology guidelines for migraine prevention, and only 40 percent knew of the American Board of Internal Medicine Foundation’s recommendation to limit opioids and imaging for migraine.
“Migraine is so stigmatized and so common that you’d think urgent cares and ERs would know how to treat it,” Feng says. “It’s pretty simple. There are a couple symptoms in every migraine. It’s 2022 — all ERs and urgent cares should have this checklist.”
Namira Islam Anani is a human rights lawyer based in Detroit who went to see a neurologist after a bout of COVID-19 had her swapping and slurring words. It was this neurologist who finally led her to a migraine diagnosis.
“At the time, my primary care doctor and other specialists I was seeing for COVID symptoms — nobody connected it,” she said.
Anani had found it difficult to get a COVID-19 test at the time because her body temperature didn’t qualify as a fever. “I’m like listen, for South Asians, a lot of us don’t run that hot,” she said.
Research backs her up: Conditions don’t present identically in everyone. A
2021 study
found that assumptions around “normal” body temperature can result in the failure to diagnose a severe fever in people with COVID-19.
Lack of education may similarly explain why an ER doctor once prescribed Nathari a rebranded medication he already knew didn’t work for migraine.
“By the time you’ve tried 20 different meds, as I have, you’re an informed patient and you can hold an intelligent conversation with your physician,” he said. “But sometimes they operate from such a stance of certainty before they even know what you have.”
Stereotyping
Physicians are used to looking for clues to piece together a picture of someone’s health and are susceptible to making assumptions about people based on their appearance.
A 2022 study in the journal Health Affairs found that doctors are 2.54 times more likely to describe Patients of Color negatively in their records, using words like “nonadherent” or “noncompliant,” than white patients. People of Color are also more likely to be undertreated for pain and to be considered “drug-seeking.”
Shaw believes that stereotyping is to blame for her treatment at an ER after a 2-month-long migraine attack.
“I walk in with my partner, I’m struggling to talk, and the woman who saw me had this wall up — she was not nice, she was giving me such attitude,” Shaw recalled. “Then this white man comes in, and she’s like, ‘Hello, sir, how are you doing?’” switching to a polite demeanor. “Maybe she thought I was drug-seeking,” she added.
Feng was considered to be drug-seeking at one ER visit, where they informed her that they didn’t have opiates.
“I’m not here for that. I want an IV, I have to work, I’m running out of sick time,” Feng recalled saying. “They were treating me as if I were there just for drugs. I’m not sure if that’s because I’m not white.”
Cultural issues
Unspoken attitudes in some cultures can contribute to underdiagnosis and undertreatment.
For example, it was Feng’s roommate 2 years ago who pointed out that it’s not normal to function with daily headaches. “In Asian culture, you’re not supposed to show that anything’s wrong with you,” said Feng.
That view kept Feng relying on over-the-counter medication and delayed them seeking medical attention for their now-chronic migraine.
“There’s a lot historically about children of immigrants not wanting to cause trouble. It’s scary to be the difficult person in a room with the doctor.”
— Namira Anani
Anani, who is of Bangladeshi descent, had only heard of migraine as something to push through. “You still have to cook, take care of the kids, have jobs,” she said, explaining that cultural conditioning led her to minimize her pain.
“There was this constant internalized narrative like, ‘It’s not that bad,’ and ‘I don’t want to be a problem,’ or ‘Let me just figure it out on my own instead of relying on the medical field,’” she said.
“There’s a lot historically about children of immigrants not wanting to cause trouble,” added Anani, who founded the Muslim Anti-Racism Collaborative , a faith-based racial justice organization. “It’s scary to be the difficult person in a room with the doctor.”
If family members have gone untreated for a condition, you may not be equipped to deal with your own.
As a transracial adoptee, Shaw never had the benefit of knowing her family medical history — another barrier to seeking a diagnosis.
How to advocate for yourself
Self-advocacy can make a difference, said Jagoo, especially when “there are often drastic power dynamics that we’re encountering as the patient in the equation.”
For some of the advocates with whom Healthline spoke, simply using the word “migraine” in an appointment could trigger a breakthrough.
A critical first step is to learn as much as you can about migraine, including:
the checklist of possible symptoms
how to talk about them with your doctor
the most effective treatments
lifestyle measures that may help
Prepare for appointments
Come prepared with a list of questions, since it’s easy to forget them in the moment.
Several of the advocates keep an annotated list of medications on their phones that they’ve tried so that it’s handy for doctor appointments. “I can say, ‘Here’s what worked last appointment. Here’s what worked 2 years ago,’” said Shaw.
And it’s important to give honest feedback about treatment. “When something was really painful for me, I didn’t express that, and my doctor just assumed that it was working,” Shaw said.
She has also spoken up when she couldn’t afford a medication. Instead of simply not filling the prescription, she asked her physician for an affordable substitute.
You may find it helpful to bring a friend or partner to medical appointments. “People weren’t listening to me in the beginning,” Shaw said. Now her partner comes along to remind her of concerns if she forgets and to have her back.
Assert your rights as a patient
You have a right to choose a different physician if your needs aren’t being met. You have the right to see a neurologist. You have the right to see a doctor who understands your background. You can — and should — also have a say in your treatment.
Anani said that physicians often assume that a woman in a headscarf will be submissive. To counter that attitude, she’ll mention at the outset that she is a lawyer and push herself to be assertive. “I could be polite but I’m not going to just sit there. I’m going to keep asking questions,” she said.
She’s worked with a leadership coach to role-play upcoming neurologist appointments to get herself into the right “headspace.”
Join support and advocacy groups
Joining in-person and online support and advocacy groups will not only help you learn the range of symptoms out there, but clue you into newer treatments.
People who’ve navigated migraine care can share information on which treatments work best and how to navigate insurance coverage, which can be a huge obstacle for people in BIPOC communities.
“The community piece is really helpful and hopeful,” said Anani, who is part of a BIPOC-specific Slack channel. “I can go back to my doctor and say, ‘I’ve seen this work for some people.’”
“Had I not had migraine myself, I would literally have thought it was a middle-aged white woman’s disease.”
— Qasim Amin Nathari
Feng wishes they’d known earlier how to advocate for themself. “Doctors can be dismissive or don’t mention things on the checklist,” said Feng, who now knows that there are a lot of resources out there. “You’re not alone,” they add.
“There are so many people in the community who are willing to share stories of what worked for them.”
Some migraine support organizations you might find helpful include:
A 2021 review in the journal Neurology outlined steps that will help address the diagnosis and treatment gap in underrepresented communities:
improving health literacy
educating primary care health professionals and training them in cultural sensitivity and implicit bias
including more underrepresented groups in headache research
improving advocacy efforts
Nathari believes that improving BIPOC representation in migraine-related materials and forums will go a long way toward bridging the gap.
“I saw such a lack of presence that, had I not had migraine myself, I would literally have thought it was a middle-aged white woman’s disease,” he said.
“I think it’s very important that my voice and the voices of people who look like me are present and active in this conversation.”
Healthline would like to thank the participants of “Life with Migraine: Experiences from BIPOC Communities” for their involvement:
Namira Islam Anani (she/her/hers) is a human rights lawyer and educator working to disrupt patterns that lead to dehumanization. Namira is a Director at ProInspire, sits on the Racial Equity Fellowship Design Team for the Detroit Equity Action Lab (DEAL) at Wayne State University Law School, and co-founded the Muslim Anti-Racism Collaborative (MuslimARC), a faith-based racial justice organization.
Find Namira on Twitter .
Kelsey Feng (they/them/theirs) is a disabled patient advocate based out of the greater Los Angeles area. They have had migraine since 2012 becoming chronic in 2021. They hold a B.A. in Political Science and a minor in Diversity and Social Inequality, and are committed to improving health inequities.
Find Kelsey on Twitter and Instagram .
Krystal Kavita Jagoo (she/her/hers) has a B.A. in Sociology from York University and an M.S.W. from the University of Windsor. A journalist, social worker, and facilitator, Jagoo is passionate about equity. Her visual art was featured in Pandemic: A Feminist Response, CRIP COLLAB, and Inclusion Canada’s This is Ableism campaign.
Find Krystal on Twitter , Instagram and Facebook .
Qasim Amin Nathari (he/him/his) is a migraine advocate, author, and founder of Black Men Have Migraine Too. He is a faith leader in the Muslim American community and has also worked in municipal government, serving as Deputy Director of Communications for the City of Newark, NJ, under former mayor, Senator Cory Booker.

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