How to Get Better Migraine Care: Tips and Tools for BIPOC Communities
- People of Color are less likely to seek care and receive lower rates of diagnosis in migraines.
- Implicit bias, a lack of access to healthcare, and cultural issues contribute to healthcare disparity.
- Knowledge about your rights as a patient can help improve your outcomes.
Sarah Reneé Shaw had a first migraine attack, with pain and nausea, and her white primary care physician dismissed her symptoms as stress from a new job.
“After suffering from headaches for 16 years, she didn’t get a diagnosis for another 8 years. They said that part of that was not knowing what a migraine was and being around people who said it was not bad.”
subpar treatment is interwoven with race, class, and gender for Shaw and Feng. The people living with throbbing pain and nausea of migraines are vastly underdiagnosed, underrecognized, and under treated in the United States compared to their white counterparts.
Social worker and journalist, Krystal Kavita Jagoo, said that people of color are often seen as just a headaches. It is very disabling.
“She explained that physicians can’t treat the condition unless they acknowledge someone’s pain.”
Jagoo spoke at a Healthline roundtable about how racism and cultural norms affect migraines. The five participants talked about how self-advocacy can make a difference in their treatment and quality of life.
People of Color are less likely to seek care for migraines.
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:
- There is no healthcare access.
- lower income.
- There is distrust of doctors.
- There is no 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.
Asian people have a migraine diagnosis rate of just 9.2 percent, which is possibly due to underdiagnosis.
“The fact that I can’t even find a statistic about how many of us actually experience it says a lot.”
The person isKelsey Feng.
Shaw noticed that the treatment she received from doctors was different when she was a child than when she was an adult. She was not allowed to seek care for her migraines.
She said that if the tests come back negative, people will say you are making stuff up.
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 The Global Healthy Living Foundation is a charity..
The studies that were used to research the migraines in Asian American families were over a decade old.
“They said that the fact that I can’t find a stat about how many of us actually experience it says a lot. I feel like there is bias involved.”
The reasons for the gap in diagnosis are both subconscious and structural.
Implicit bias, or unconscious attitudes about certain groups, can affect how physicians treat patients. A
Per the AMF, only 14 percent of Black people with migraine are prescribed medication for acute migraine compared to 37 percent of white people.
“Shaw’s physician prescribed anti-anxiety medication when she first complained of headaches. She was too young to be in pain, according to another doctor.”
“One of the nurses commented that she didn’t cry like other patients when she was at the appointment for her migraine treatment.”
Shaw is used to thinking, “Are you saying that because I\’m black?”
After 4 weeks of nonstop headaches, Qasim Nathari went to the ER and was kept waiting for 8 hours.
He mentioned the drug combination that had worked for him in the past. Nathari, an activist in both the Muslim and Migraine communities, said that he received a stern “We don\’t do that here” from the mayor.
He said that his radar went up and he thought it was a Black thing. Two white doctors were there. Maybe they had a problem with a black man telling them how to do their job.
The ER physician offered something? Nathari already had an over-the-counter pain relief.
Nathari is the only black man in the migra advocacy circles, a space that is dominated by 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
Only 28 percent of people knew that the American Academy of Neurology recommends that people avoid using narcotics for migraines.
It is so common that you would think urgent cares and ERs know how to treat it. It is pretty simple. There are some symptoms of a migraine. All ERs and urgent cares should have this checklist.
A human rights lawyer based in Detroit, who went to see a neurologist after a bout of COVID-19 had her swap and slurring words, is named Namira Islam Anani. She finally got a migraine diagnosis after this neurologist led her to it.
She said that her primary care doctor and other specialists were seeing her for symptoms of chronic bronchitis.
“Anani was not able to get a COVID-19 test because her body temperature didn’t meet the criteria for a fever. She said that a lot of South Asians don’t run that hot.”
Research backs her up: Conditions don’t present identically in everyone. A
“An ER doctor once prescribed Nathari, a rebranded medication he already knew didn’t work for migraines, because he didn’t know how to teach.”
He said that by the time you try 20 different drugs, you will be an informed patient and you can have a conversation with your doctor. Sometimes they operate from a stance of certainty before they even know what you have.
“Doctors are used to looking for clues to piece together a picture of someone’s health and are more likely to make 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 she was treated unfairly at the ER after a migraine attack.
Shaw said that the woman who saw him had a wall up and was not nice. She was like, “Hello, sir, how are you doing?” after this white man came in. She said she might have thought she was drug-seeking.
“At one ER visit, they told her that they didn’t have opiates, which made her think she was drug-seeking.”
I am not here for that. I need an IV, I have to work, I am running out of time to take sick time, I said to Feng. They were treating me like a drug user. I am not sure if that is because I am not white.
Unspoken attitudes can contribute to underdiagnosis.
It was his roommate who pointed out that it was not normal to have headaches. In Asian culture, you are not supposed to show that you are not right.
That view kept Feng relying on over-the-counter medication and delayed them seeking medical attention for their now-chronic migraines.
“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.”
The person is Namira Anani.
Anani, who is of Bangladeshi descent, only heard of migraines as a way to push through. She said that cultural conditioning helped her to minimize her pain.
She said that there was a constant narrative of “It\’s not that bad, and I don\’t want to be a problem.”
“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 to the doctor for a condition, you may not be able to deal with your own.
Shaw never had the benefit of knowing her family medical history, which was another barrier to seeking a diagnosis.
Jagoo said that self-advocacy can make a difference when there are often drastic power dynamics that we are facing.
For some of the advocates with whom Healthline spoke, simply using the word “migraine” in an appointment could be a breakthrough.
It is critical that you learn as much as you can about the problem.
- There is a list of possible symptoms.
- How to talk about them with your doctor.
- The most effective treatments.
- lifestyle measures that may help
Prepare for appointments
It is easy to forget questions in the moment, so come prepared with a list.
“Several of the advocates keep a list of their medications on their phones so that they can see them at a doctor’s office. I can say what worked last appointment. Shaw said that the things that worked two years ago were here.”
“Honest feedback about treatment is important. Shaw said that when something was painful for him, he didn’t say anything.”
“She spoke up when she couldn’t afford a medication. She asked her doctor for an affordable substitute instead of simply not filling the prescription.”
“It is helpful to bring a friend or partner to medical appointments. Shaw said that people weren’t listening to him in the beginning. Her partner is going to remind her of her needs if she forgets.”
Assert your rights as a patient
“If your needs aren’t being met, you have a right to choose a different doctor. You have the right to see a doctor. You have the right to see a doctor who understands you. You can have a say in your treatment.”
Anani said that physicians assume that a woman in a headscarf will be submissive. She will mention at the beginning that she is a lawyer and push herself to be assertive. I could be nice but I will not sit there. She said she was going to keep asking questions.
She has worked with a leadership coach to get herself into the right headspace.
Join support and advocacy groups
You can learn a lot about the symptoms and treatments by joining support groups.
People who have been through the migrane care process can share information on how to navigate insurance coverage and which treatments work best.
Anani is part of a BIPOC-specific Slack channel and she said the community piece is helpful and hopeful. I can go back to my doctor and say I have seen something.
“Had I not had migraine myself, I would literally have thought it was a middle-aged white woman’s disease.”
Nathari is the son of Qasim Amin Nathari.
They should have known how to advocate for themselves. “Doctors can be mean or not mention things on the list,” said Feng, who now knows that there are a lot of resources out there. They say you are not alone.
There are many people in the community who are willing to share their stories.
Some organizations that support migraines are helpful.
- The Global Healthy Living Foundation is a charity.
- 50 state networks
- The Alliance for Headache Advocacy is made up of people who advocate for headaches.
- Migraine, miles for it.
A 2021 review in the journal Neurology outlined steps that will help address the diagnosis and treatment gap in underrepresented communities:
- Improving health literacy.
- It is important to maximize the use of telemedicine.
- Training primary care health professionals in cultural sensitivity and implicit bias is what we are teaching them.
- Including more underrepresented groups in research.
- Improving advocacy efforts.
Nathari believes that improving representation of the bi-sexually-attractive population in materials related to the migraines will help bridge the gap.
“He said that he would have thought it was a white woman’s disease if he had not had a migraine.”
I think it is 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”
A human rights lawyer and educator, she is named Namira Islam Anani. A Director at ProInspire, she is also a member of the Racial Equity Fellowship Design Team for the Detroit Equity Action Lab, and co-founded the Muslim Anti-Racism Collaborative.
Find Namira on Twitter.
The Los Angeles area has a disabled patient advocate namedKelsey Feng. They have had headaches since 2012 and will have them in 2021. They hold a degree in Political Science and a minor in Diversity and Social Inequality.
Find Kelsey on Twitter and Instagram.
She has a degree in Sociology from York University and an M.S.W. from the University of Windsor. Jagoo is a journalist, social worker, and facilitation. Her art was used in several campaigns.
Find Krystal on Twitter, Instagram and Facebook.
Black men have migranes too, is a group founded by Qasim Nathari. He is a faith leader in the Muslim American community and has worked in municipal government, most recently as a deputy director of communications for the City of Newark, NJ.
Find Qasim on Twitter and Instagram.
Sarah Reneé Shaw (she/her/hers) is the BIPOC Patient Advocate and Community Outreach Manager at The Global Healthy Living Foundation is a charity. (GHLF). She is committed to patient advocacy and health equity efforts to support Black, Indigenous, and People of Color and LGBTQIA+ patients. As a migraine patient herself, Sarah Reneé helps implement migraine patient activities and coalitions, as well as assist with GHLF/CreakyJoints patient councils.
Find Sarah Reneé on Twitter and Instagram.