Patient Blogs | Migraine
Why People of Color Need to Talk About Migraine
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I’m well aware that I have been fortunate in my experience navigating the health care system as a Black woman with migraine. But it is not lost on me that many of my peers have not been as fortunate. 

It is well documented that migraine symptoms from people of color are routinely ignored or minimized due to a lack of access to minority doctors. In addition, Black, Indigenous, and people of color (BIPOC) may also be less likely to receive treatment for migraine symptoms.

According to data, minorities are more likely to:

  • Report migraine episodes that are more frequent and severe.
  • Have their migraine underdiagnosed or undertreated (or both).
  • Discontinue treatment prematurely, regardless of their ability to afford medication.

The research underscores why it is critical to include communities of color in migraine discussions. 

Did you know you can have a migraine without having head pain? I have a friend who can barely hear out of her right ear during episodes. She has horrible tinnitus; she's so sensitive to sound that she needs to wear earmuffs almost 24/7 and occasionally has debilitating vertigo. Migraine triggers are diverse, and they do not discriminate.

Many people have heard countless times, “You don't look like you're in pain.” Can someone explain to me what "sickness" looks like? Some people look the same day to day, even when sick. Since migraine episodes are invisible, it compounds the issue when explaining the condition to non-migraine warriors. 

Even worse, throughout history, people in my community have not been allowed weakness, pain, or inability to function. It has created a culture of sickness and needless pain, a generational curse that we must break. 

If you are seeing a specialist who isn’t listening to your symptoms and providing effective treatment, switch specialists -- immediately.  

If you're struggling with explaining your condition to family and friends, here's a suggestion from my friend: Tell people what you're experiencing WITHOUT saying migraine. You have a neurological disorder that causes brain fog, nausea, weakness, pallor, visual/auditory/kinesthetic perception issues, hot/cold flashes, and worst of all, debilitating pain.  

I have also learned to alter my language when speaking about my life with migraine. For example, I refer to my episodes and triggers as "attacks." I think even that subtle language change can be helpful to distinguish them from a headache. After all, I've never met anyone who calls their tension headaches "attacks." 

In my youth, I had frequent migraine attacks. Not headaches. Not bad headaches. Not even severe headaches. Migraines.

We need more allies helping to address health care disparities and racial and implicit bias. For anyone who has been shown a lack of compassion when it comes to living with migraine, I'm sorry you had this experience.

The first way to begin changing health care inequalities is to discuss them and work toward systemic change. You can start by finding and supporting an organization that advocates for people with migraine. Finally, we must continue to push for more research and treatment options.

 

Tap into a community of fellow migraineurs on Facebook. Learn, share, connect in our Migraine Support Community.

 

Photo Credit: Vladimir Vladimirov / E+ via Getty Images

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Naki Carter

Naki Carter

Diagnosed since 2001

For nearly 20 years, Naki Carter has been living with migraine. Formerly an award-winning journalist, she is committed to ending the stigma around the invisible illness. Carter lives in South Florida near lots of family and friends, where she enjoys a daily dose of “vitamin sea.” Follow her on Twitter and Instagram.

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