Ronetta Stokes was several days into a severe and debilitating  migraine attack when her migraine specialist recommended she go to the  emergency department for treatment. By the time she arrived at the  hospital near her Connecticut home, her symptoms were so intense that  she could barely walk or speak. Ronetta, who is black, was eventually  taken to an exam room and seen by an emergency-room physician, who was  white. After a brief examination he told her: “I’m not giving you any  drugs.”

Ronetta believes the physician made an assumption based on her appearance. And her race. “I had my hair pulled back, I was in sweatpants, my eyes were half closed,” she recalls. Ronetta tried to convey that she was there on her doctor’s orders and that she was experiencing a migraine attack, not fueling a drug  addiction. She was sent home with an over-the-counter antihistamine.

Unfortunately, it wasn’t the first – or last – time Ronetta experienced dismissive care when seeking help for her migraine disease. And she knows that her white friends rarely have similar experiences. In fact, research shows that in comparison to white counterparts, black patients are more likely to have their migraine symptoms underdiagnosed and/or undertreated, and less likely to be prescribed migraine medication.¹, ²

Rather than being defeated by that reality, Ronetta is using her experience to combat disparities in migraine care. She has become a vocal migraine advocate to help healthcare providers understand the unconscious bias that may be influencing their treatment of some patients. She also shares her story with hopes that women of color will see themselves in it. She wants them to  understand that they don’t have to power through the pain; they have a disease that requires medical care, and they deserve to be treated with respect and compassion.

Ronetta, now 49, began experiencing migraine attacks in her teens, but it was decades before she received a diagnosis of chronic migraine and chronic intractable migraine with, and without, aura. Chronic migraine is defined as headache occurring on 15 or more days per month for three or more months, with at least 8 headache days per month having the features of migraine headache.³

Her migraine attacks start as a pulsing, throbbing pain in the front right side of her head. The pain then migrates to the back of her head, and she feels intense pressure and tension in her head, neck and shoulders. Nausea, dizziness and light sensitivity soon follow. She also has noise sensitivity and hears a unique ringing in her ears – like the whooshing sound of flowing water. Constant and unrelenting. When an attack hit, all she wants is to pull a blanket over her head and retreat from the world. “I just want to be left alone with no noise, no light, just dark,” she explains.

Over the course of her migraine journey, Ronetta has tried countless medications. “I would try this, then I would try that. Nothing worked. I felt like a mouse on a wheel,” she says. Frustration with her worsening condition led her to a new healthcare provider, who identified that she was experiencing medication overuse headache. Medication overuse headache is
defined as headache occurring on 15 or more days/month in a person with a pre-existing primary headache and developing as a consequence of regular overuse of acute or  symptomatic headache medication (on 10 or more or 15 or more days/month, depending on the medication) for more than 3 months.³

In partnership with her provider, Ronetta was able to refine her treatment plan. While she still lives with migraine disease, her experiences have helped her become a better self-advocate. She admits this did not come naturally to her, and over the years she often downplayed the impact of her disease. She believes that is common among black women, who are “brought up not to show pain,” she says. “We’re taught that you have to keep going, you have to be strong. That’s our role.”

When Ronetta first started participating in migraine support groups, she noticed she was often the only woman of color in the room. She knew there was a community who needed to hear and see people who looked like her. So she started sharing her story at advocacy events and on migraine blogs. And then she started hearing from women of color. “People said, ‘I thought I was the only one’,” she says. “Even if I talk to just one person who can relate to my story, they can tell someone else, who can tell someone else.”

Ronetta also serves on the Disparities in Headache Advisory Council, a collaborative effort comprising of patient-advocacy organization leaders, headache patients and healthcare providers working to identify and determine solutions to racial disparities in headache medicine. Lundbeck is a founding sponsor of the group. Her message to healthcare providers: “See the black woman, the Hispanic woman, the Asian woman. We don’t all look the same.”  

When Ronetta told friends about her experience at the emergency department, they were appalled. A few white friends offered to accompany her should she ever need to visit the emergency department again. But Ronetta said no thank you. “I want to be treated with respect because I am me, not because I have a white friend sitting next to me,” she says.

She brings that same self-sure spirit to her daily journey with migraine – even though there are hard days. “It’s not going to win; I’m going to keep fighting and being a warrior,” she says. “Migraine is going to have to learn how to deal with me.”