WASHINGTON — Jaime Sanders knows the feeling well: a throbbing pain. Bright, white lights making it worse, or the strong smell of cleaning products or an old car. The intensity of suffering brought on by loud noise.
The Fredericksburg woman had her first migraine attack when she was just eight years old. "It felt like I was being hit in the head with a hammer," Sanders shared on a Tuesday in June; National Migraine and Headache Awareness Month.
Much more than a regular headache, a migraine can be completely debilitating and severe enough to bring all of your daily functions to a halt - leaving many bed-ridden until it subsides. Currently, 40 million Americans are living with the chronic condition, the Coalition for Headache & Migraine Patients says.
In addition, three out of 10 people will suffer additional neurological symptoms, including seeing flashing lights or tingling throughout the face or body, according to Dr. Jessica Ailani, the director of the MedStar Georgetown Headache Center.
Sanders has trudged through the attacks for most of her life, now 43 years old and a mother of three. Throughout the years, she's felt the intense agony for as long as a few hours to three straight days; sometimes a couple of times a month, and sometimes daily, like when her hormones fluctuated during pregnancy, making the symptoms worse.
She still remembers how she had to walk out of her sister's wedding, just as the father-daughter dance was about to begin, tears streaking her face from the aching in her head. Or how she had to run out of an amusement park as a child to seek shelter from the blaring bright sun in the sky, trying not to vomit from the nausea characteristic of the condition.
Although she attended college and at one point, had a job in a human resources office, her plans for the future slowly began to crumble as the migraine attacks continued.
"People don't understand. It steals your dreams and your vision for your future."
Today, she works as a patient advocate and spreads awareness about migraine attacks to anyone interested in engaging with her blog, The Migraine Diva.
"There's so many things that go into how a person deals with living with this disease because you're confronted a lot of the time with people's misconceptions and bias," Sanders said.
Over her life, she's heard the gamut of misguided comments to direct insults and judgments from peers to professionals. Everything from being accused of trying to get out of class as a youngster to being flakey in friend groups or hunting for drugs in doctor's offices, as if her symptoms weren't truly that severe.
"People don't understand, and because it's such an invisible illness, you don't look like you're sick; you don't look like you experience these things constantly. So people expect you to feel how you look - and that's just not the case. So many of us just wind up throwing these masks on and pretending we're okay, when most of the time, we're not."
In addition, according to Dr. Ailani, migraine attacks are often experienced more by women than men, which could contribute to some people's dismissal of the intense symptoms. It can also be hard to get taken seriously in environments as a person of color, or another marginalized group member, Sanders shared of her own experience.
"I had to pay more attention to how I dressed and how I spoke . . . I had to make sure not to get angry or upset because then I will come across as the angry Black woman. And I don't want to fall into that stereotype. So it's very difficult having to maintain a level of grace and respect when you're being blatantly disrespected, and dismissed."
Sanders and Dr. Ailani agreed that it can be insulting and counterproductive for acquaintances to try and give unsolicited advice to people struggling with migraine attacks, even though they're often well-meaning; those struggling have likely already tried your suggestions.
Sanders said that, ultimately, having a Black woman as her primary care provider has been a welcome change when it came to feeling heard and cared for.
"The way that she like explains things and listens and says, 'Well, that's not right, this is what should be going on' . . . I know that made a difference for me, it can make a difference for other people as well."
As far as how others who are feeling dismissed in their care can go about improving the situation, it's always best to clearly document your symptoms, triggers and previously-tried treatments, according to Dr. Ailani, so that you can be clear in your explanation to your doctor.
Try not to save the conversation about your migraine experience until the end of the appointment; in fact, schedule a time to meet solely about what you are experiencing if you feel that would be helpful. Migraine symptoms can be treated in a wide variety of ways and what's most effective can differ with each patient.
"Don't be nervous to talk about it," she said. "And if you don't feel comfortable, and you don't feel like you're being taken seriously, go see somebody else."
Sanders echoed Dr. Ailani's advice. "You can fire your doctor, you don't have any commitment to that health care provider. It's supposed to be a partnership and not a dictatorship. You have a say in your treatment, and what you want to do, what you do not want to do, and there should be an open conversation."
Although, she acknowledged making a switch can be easier said than done.
"Not everybody has access to be able to change providers; they may not have the insurance to allow them to do that, it might not be covered . . . there's transportation issues - it's not always going to be easy for everybody," Sanders said. "But to know that there are resources, outside of that one provider who's not hearing you, that can help uplift your voice and get you to a place where you feel like you're getting adequate treatment."
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