“It clicked for me,” says Brown, now 40. “I was like, ‘Oh, you can actually go to the doctor for this, you can talk to somebody? Oh, my gosh!’ And also, ‘I’m not alone with this feeling? You’re feeling exactly what I’m feeling?’” he recalls. Unfortunately, Brown’s experience is not unusual. The majority of people with migraine never seek medical care for their pain, and more than half of people with migraine are never diagnosed, according to the Migraine Research Foundation. The underdiagnosis and undertreatment of migraine is even more of an issue among groups that have been marginalized, according to Megan Irby, PhD, a senior research associate at the Maya Angelou Center for Health Equity at the Wake Forest School of Medicine in Winston-Salem, North Carolina. That would include people of color, especially women and people who are financially strained or who have experienced poverty, says Dr. Irby.
The Power of Seeing ‘Someone Who Looked Like Me’ With Migraine
Although a diverse group of people experience migraine, it can sometimes be missed, says Brown. “For a while I was like, ‘Maybe I’m alone in this, or one of the only ones.’ I was fortunate to attend a historically Black college, Florida A&M University, where I saw someone who looked like me who experienced migraine,” he says. Making that connection helped Brown seek the diagnosis and treatment he needed. “That’s when I was able to truly understand that I was living with migraine,” he says. It was also an important first step in learning about the disease and getting the tools he needed to support himself in order to feel better and be better, according to Brown.
Skepticism and Lack of Empathy From Family and Friends
When Brown first began experiencing migraine attacks, he encountered skepticism about his symptoms and the pain he was experiencing. “It was very difficult, because unfortunately there’s a lot of stigma when it comes to your family and friends around migraine; most people think it’s just a headache, and it’s not just a headache,” says Brown. Brown isn’t alone in feeling this way. A 2019 Health Union Study of people with migraine found that 47 percent of those surveyed said that others “don’t understand that migraine isn’t ‘just a headache.’” Trying to express and communicate what it was like to have migraine to family members, friends, teachers, and coaches was extremely difficult for Brown. “They didn’t have empathy for what I was going through. They didn’t understand that I wasn’t just trying to get out of a test or trying to get out of practice — I truly could not function. It was debilitating,” he says.
Slow Evolution in Understanding of What Migraine Is
The bias that can be associated with migraine goes back over a century, Irby says. This bias is due in part to the fact that about 70 to 80 percent of people who have migraine are women, she says. “Migraine has long been viewed as this condition that women have, and they were just supposed to grin and bear it, and because of that, it’s become highly stigmatized,” says Irby. Sigmund Freud, the founding father of psychoanalysis, who died in 1939, called migraine a psychogenic condition that was rooted in the subconscious or in psychiatric conflict, as described in a paper in the journal Cephalalgia. “That’s just not true, but that notion continued to be believed even through the 1980s and has informed a lot of what we ‘know’ about migraine,” Irby says. The last 40 years have been spent trying to figure out what migraine really is, says Irby. “There’s been a definite shift in understanding migraine as this complex interplay of biology, psychology, behavior, and environmental factors. And with a better understanding of what migraine is, we are also better able to understand what precipitates migraine attacks, how to manage them, and how to work with individuals on the long-term care of their migraine,” she says.
Migraine Is Underdiagnosed and Undertreated in People of Color
Now that we have effective migraine treatments, those treatments are affordable and available mainly to people who already have the privilege and financial resources to access quality healthcare, says Irby. “For individuals who are outside that privilege, the stigma of migraine still holds true,” she says. According to a paper published in 2015 in the Journal of the National Medical Association, Black Americans are both more likely to report headaches that are more frequent and severe and to have their headaches underdiagnosed and undertreated. There are some initiatives that signal potential progress, says Irby. “We’ve been able to do some epidemiological studies that have documented the presence and severity of migraine across marginalized groups, and that’s helped to bring more awareness to the problem and show that there is a health disparity here,” she says. But “we also see differences in rates of prescribing, perhaps because people of color or those who have been marginalized are not taken as seriously by the medical community when they present with complaints of headache,” says Irby. A meta-analysis published in Pain Medicine that looked at 20 years’ worth of studies on many different kinds of pain, including migraine, found that Black patients were 22 percent less likely than white patients to receive any kind of pain medication.
Clinical Trials on Migraine Treatment Currently Lack Racial Diversity
“The National Institute on Minority Health and Health Disparities is calling for a greater focus on marginalized communities and people of color in research so that their voices will be heard, and so they will be represented in the research that helps to determine which medications will be approved — as well as establish the efficacy and safety of those drugs in different populations,” says Irby. Part of the problem is that many trials don’t do a good job of recruiting people from all different backgrounds to participate, she says. Many researchers don’t have the training or funding they need to engage and reach out to marginalized populations. “The approval of many of these medications is based on clinical trials that mostly included middle-aged white women,” says Irby. Research published in 2017 in Headache journal found that in clinical trials for potential new migraine treatments, between 80 and 90 percent of all participants were white. According to Irby, there can also be a distrust in the medical system and hesitancy to participate in medical research in Black communities, which is understandable given historical precedent. “There’s a history of events such as the Tuskegee syphilis study and eugenics [including forced sterilization based on race, poverty, and disability]; those legacies of atrocities and historical abuses committed against communities of color remain in the living memories of people in many of these communities,” she says. This is hindering the field’s ability to move forward, says Irby, and “researchers need to be better equipped to overcome these barriers.”
Migraine Treatment Needs to Address the Whole Person
Much of medical research is focused on categorizing people one the basis of just one way they identify themselves, such as gender, race, ethnicity, education, or income level, says Irby, but people don’t fit neatly into single categories. “It’s the interplay of these things that has a lot to do with the kind of care that each individual needs to receive,” she says. One of the shortcomings of migraine treatment, says Irby, is that there has not been enough focus on the whole person, all the different ways they may live their life, and the various challenges they face. Physicians and researchers need to recognize individuals not just in terms of the box they may have checked for race, but for who they are and for their lived experiences, especially in the context of migraine, she says. “We know that migraine is impacted so much by what we do every day — as well as the stresses we experience and the discrimination people experience. Those stresses can all build on one another to trigger a migraine attack or create ill health,” says Irby.
Brown Is Working to Raise Awareness That Migraine Affects All Kinds of People
Karamo Brown is a spokesperson for a new awareness and community-building program called the Know Migraine Mission, sponsored by the pharmaceutical companies Amgen and Novartis, makers of the migraine medication Aimovig (erenumab). The Know Migraine Mission seeks to be inclusive: Everyone, including women, men, and people of color, should know there is a community that understands what you’re going through, says Brown. “At the end of the day, regardless of race, gender, or sexual orientation, we all experience this, and we want people to understand what we’re going through,” Brown says. By building awareness and facilitating communication, Brown hopes the program will increase knowledge and acceptance around migraine and the diverse group of people who experience it.
How to Overcome Barriers and Get the Best Migraine Care Possible
Not everyone has equal access to health insurance or healthcare. According to Irby, “Being able to seek care and getting the medications you need is indeed a privilege.” For people who are able to get into a doctor’s office — or line up a telemedicine appointment — and be seen for their migraine, here are a few strategies for getting the treatment you need.
Listen to Your Body, Not to Others’ Judgment
For Brown, a lack of support and information about migraine caused him to start doubting his own experience. “I started to subscribe to what people were saying to me: Maybe I was overexaggerating, maybe I was just being a little bit too sensitive. These are the messages I was hearing,” he says. His advice now? Listen to your body, trust yourself about the way you are feeling, and don’t let others minimize it, says Brown.
Advocate for Yourself
“If you feel that you have a medical condition that needs to be treated, you need to be your own best advocate,” says Irby. Even the best doctors can be pressed for time, and you may get only a couple of minutes with them in the room, so it’s important to speak up, she says. If you’re not sure how to be your own advocate, these tips from the wellness community Migraine Again can help.
Set Goals for Your Appointment
Setting goals for your doctor’s appointments ahead of time can help, says Irby. Be clear about what you need from that visit. “Make sure you tell your doctor the most important things about your headache or your migraine attacks,” Irby says. Share your most bothersome symptoms and the main ways migraine impacts your quality of life. “This can help your doctor tailor your treatment plan in a way that best addresses your needs,” she says.
Acknowledge Your Feelings
Living with migraine is difficult, especially in the middle of a pandemic. “Twenty twenty was a doozy, and we’re still kind of in that now,” says Brown. “It seems the American way is to always ‘power through’ things, but it’s important to honor what you’re feeling.” Brown hopes that when other people hear about his experience with migraine, it will help them feel less isolated and alone. “When we see each other for who we are, we’re our strongest,” says Brown. “Together we’re stronger.”
