Managing Migraine Without “White Coat Anxiety”

The headache attacks started four years ago, when Chelsea Wilson was 27 and pregnant with her son, Wyatt. Each time, they would begin with throbbing pain in her forehead that would slowly intensify and surround her right eye. But Chelsea didn’t want to take any medication, so she learned to ride out each episode in a dark, quiet room, until the sometimes excruciating pain subsided and she could get up and return to her life. For now, that’s the extent of her treatment.

And it is a busy life: Chelsea and her husband, Garrett, now have two kids: Audrey was born before Wyatt turned 2. Chelsea works in public education, specifically with Native American communities and has spent much of the pandemic helping teachers and schools adjust. In her spare time, she tries to stay active through golf and tennis.

The headache attacks continued maybe once a month, sometimes just a bother, often with intense pain that would bring her to her knees. The headache attacks always coincided with early pregnancy or her menstrual cycle, and Chelsea figured that because they were hormonal, they were migraine, and there wasn’t much she could do about it.

There are many women like her: According to a study by the American Headache Society, “Among ethnic groups recorded, American Indians and Alaskan Natives had the highest prevalence of migraine” at 19.2% of the population. Women are affected by migraine at three times the rate of men, and more than half of these women experience them in tune with their menstrual cycle, the National Headache Foundation has reported.

A Rightful Reluctance Toward Health Care

Chelsea, who lives in Edmond, Oklahoma, is a citizen of the Cherokee Nation. It’s her American Indian heritage, she says, that has likely influenced her attitude toward dealing with the pain, including her reluctance to seek help.

“Most Native women I know are providers, professionals, mothers, really involved with their communities,” Chelsea says. “You just get through it because we have lots of other things that we are doing. A lot of our societies are matriarchal and matrilineal by culture. And when everybody else comes first in your life, you tend to come last.”

There is also an additional reluctance to seek medical treatment among many Tribal communities that’s rooted in lived experience: There are documented cases of involuntary sterilization programs and treatment experimentation on children enrolled in federally funded American Indian boarding schools, even into the 1970s.

“I would never presume to speak for all Native people, but there is something cultural about [avoiding] doctors and dentists,” she shares. It’s “white coat anxiety,” she says, also known as “white coat syndrome,” which for Chelsea, manifests as a spike in blood pressure when visiting a doctor’s office. In fact, white coat syndrome affects 15% to 30% of all patients, across all demographics and all medical conditions.

“For my Tribe and especially for the 14-county jurisdiction of the Cherokee Nation, there are horror stories about how things used to be done even 20 years ago, and that has ripple effects that are intergenerational,” Chelsea says. “I know we have a health care system that is improving by leaps and bounds, but it’s definitely a thing.”

And in addressing her pain, “I think the biggest roadblock was myself. I kind of assumed that no medical professional would be able to help me. Maybe I dismissed my own pain, too. I figured the only thing that could help with migraine were drugs, and I didn’t want to be seen as drug-seeking,” she says.

She couldn’t think of any natural treatments common in her community to manage her migraine. “The only Indigenous health remedy I have a visceral memory of is my grandpa blowing tobacco smoke from a pipe into one of my infected ears. At the time, as a child, I remember it miraculously working. He’s passed since I started having migraine, so I think it doesn’t count,” she says with a smile.

Prioritizing Her Health

Now, with an active, growing family and her 30th birthday behind her, Chelsea is starting to take her health more seriously. She’s interested in the growing Indigenous wellness movement—in which many Native Americans are incorporating health care and wellness with ancestral teachings and methods. Conferences, events, nonprofits, and more have begun to take off in the past decade, connecting the awareness of modern well-being with their traditional practices of wellness.

She and other women who are learning about Indigenous wellness are also learning to take care of themselves first before they can fully care for others, another step toward refining Chelsea’s migraine care. For example, she recently realized that like many American Indians, she is lactose intolerant, and has given up milk products. “I can’t tell you how unbelievably revolutionary that has been for me,” she says.

It’s early on, but after giving up dairy in March, Chelsea noticed immediate improvements. “My menstrual cycle and my digestive system have gotten much more regular. Fingers crossed, it will help [migraine], too.”

She’s paying closer attention to the health of others as well. On a recent family trip, Chelsea’s sister was not feeling well.

“I kept seeing her pressing the back of her hand over her eye,” something that Chelsea was able to recognize immediately as the likely beginning of a migraine. “Eventually, I helped her get to bed and turned off the lights and gave her some water, and explained to the rest of the crew that she was probably down for the next 12 hours.” Her sister is 27, the same age as Chelsea when she had her first migraine attack.

Chelsea is ready to tackle her migraine. “I will do a little bit of research on my own to make sure there are treatment options that are non-narcotic. As I get older, and as I realize that health is not something to take for granted, it’s becoming more of a priority. I am having more open conversations with my doctor and making more conscientious choices,” she says. “When you are in pain and don’t feel good, or like you [don’t] have any control over your body, it makes good health that much more of a blessing.”

— Calli Barker Schmidt