Migraine Advocacy Has a Racism Problem and It’s Time to Shine the Spotlight On It

Racial inequalities on Day 2 highlights the racism problem in the migraine community

So they finally want to talk about race, and since this was a direct criticism I made last year, I’m going to be honest in saying this barely scratches the surface. The exclusion of experiences of BIPOC in the Summit and the inability to truly make a statement when patients needed support last summer is precisely why I did not pay to attend this year. This interview affirmed that choice.

And it’s about damn time the silence is broken.

This article has been created in collaboration with two black, queer, women to specifically address the intersection of these identities and how this interview struck them and highlight where it went wrong. This piece wouldn’t have been possible without them, but in calling out the racism in this community I am keeping their identities private.

In a single glance this interview was a gentle introduction to how race can play a role in health outcomes and Sheila walked us through social determinants like food insecurity, security, transportation barriers, income inequalities, and education. These determinates are often intricately linked to where we live, work, and pray and the zip codes in which we do this. This alluded to the history of our country and how these determinates may have come about – without actually taking the time to go there. This entire talk was presented in a “keep our white audience comfortable” and “keep it relatable and applicable to topics beyond race” and I find it to be a shallow approach to something so serious.

To one black, queer member of the community, she noted that this interview operated on different assumptions than the rest of the interviews. Typically, we as viewers are met with the expectation that we have some basic understanding of the topics being discussed and we are only deepening our own knowledge by attending the Summit. This interview however took a stark turn when taking on the complex topic of race, disparities in care, and how it impacts health outcomes and reduced it to an oversimplified conversation designed only with white people in mind.

It was as if we were all encountering racism for the very first time, and even Sheila appeared to have to do a lot of hand holding and gentle correcting as to not step on the whiteness enshrining the audience. Subtle microaggressions occurred in this interview, such as insisting we are a melting pot where Sheila has to correct the course of the conversation to stress that cultural nuances (language, history, culture norms) that make us very much not a melting pot cannot be ignored when it comes to getting healthcare. Though the talks did address doctor’s needing to be more culturally aware when planning care, the gentle approach to discussing racism centered the audience, not the community impacted, nor the larger institutional problems present.

It was noted that “the only point at which the interviewer addresses BIPOC more directly is to ask in effect how we as individuals can or should adjust our lifestyles in order to deal with systemic racism. [This] underlines what seems to be their attitude, that discrimination and more specifically racism exists somewhere out there among other people, but it’s not our problem or the problem of anyone in our community to fix.”

Frankly, a white woman had no business conducting the interview. Her interjections appeared to make the conversation one with comedic and light hearted intent. Her anecdotal “relatable” stories worked from my perspective to erase the real and deadly impact of being able to drive through your own town and see the differences in zip codes and related health outcomes. People die because of their zip code. Redlining and discriminatory policies have held up disparities and exacerbated them and they can not be overlooked and presented in a manner of “relatability” for a white audience. Nor is it appropriate to strive so hard to remove the migraine community and it’s advocates from acknowledging they are a large part of the problem.

It was bad from the very beginning when the talk was presented as “this interview focuses on race BUT the same principles apply to gender, sexual orientation, socio-economic status…” you get the point. This interview is about race. Point blank period no ifs ands or buts needed. Racism in our systems and our advocacy needs to be addressed without qualifiers. This interview is about race. Period.

It’s also immediately mentioned that this is a global discussion, implying a level of diversity that was quickly abandoned. The beginning of talk set the tone for the remainder of the interview. When Paula likened racism to that of gender and sexual orientation, what she truly did was make this a palatable talk about discrimination for the Summit’s target audience of middle aged, middle class white women. And perhaps through that lens it would have been a fair discussion of different ways discrimination creates barriers to care. But this talk was about racism. And as noted by the women who helped develop this article who are impacted directly by the other factors, racism cannot just be swapped in and out for other topics.

One community member notes, “While we all know that different factors (socio economic status, gender, sexual orientation) can most definitely affect access to care and how patients are treated its actually extremely damaging for the conversation to bring these up when you’re talking about one topic. Especially when it comes to race. Had this been a discussion about discrimination, that would be something different. But this gives the okay for people to speak over the experiences of BIPOC patients and say things like “I’m a white woman and I too experience discrimination when I go to the doctor because I’m a woman” in reaction to an article or interview talking about racial disparities. Unfortunately, discrimination and medical gaslighting happens all too often for chronic pain patients like women with migraine and it’s a problem that we have a long way to fix, however this is not the time or place to discuss these issues.”

This observation was echoed by another queer, black woman. She expanded that for her personally in office visits it may not be fully apparent as to what the source of discrimination is, but sometimes she has to choose which area to put more effort into. The interview mentioned finding doctor’s of your same race as something beneficial, but for her finding a black doctor often has to be an identity she chooses to not look for in a health care professional and may instead look for someone who is queer friendly or better understands another of her complex conditions.

To her, it goes even further as a barrier to care. When traveling or even in considerations of relocating within her city where she would have to use the other hospital system in town, it’s a large deterrent to go to the ER or establish new care. The process of wading through the discrimination and rebuilding relations, providing race based education to new doctors, and so on is an exhaustive process. And in choosing to not seek out the few and far between black doctors, racism becomes the barrier at the forefront.

The interview continued to strive to cover a variety of topics without grounding any of them or truly connecting them to why they were important. One community member highlighted that slavery was tossed in using a bit of the “magical negro” trope with Harriet Tubman.

Compounding on that sentiment, our other community member describes how she felt during this highly inappropriate segment: “Listening to the interview when they brought up that one of the theories of Harriet running away was due to migraine was extremely triggering for me to hear as a black woman. It’s fine if we talk about Harriet Tubman and migraine, but even suggesting that this theory is out there that having migraine was more of a reason to run away then say, I don’t know black people being someone else’s property with no rights where they were tortured, lynched, raped, and enslaved erases their experiences and makes white people feel comfortable with our nation’s history with slavery and that it wasn’t that bad to run away until you throw migraine into the mix. It may not seem like it at the time, but this contributes to harmful behavior such as racial discrimination in healthcare, but also racism within our own migraine communities by patients themselves.”

Overall, Paula Dumas was the wrong person to conduct this interview. Racism is uncomfortable and if you are unable to carry yourself professionally, you should hire someone who can. Had this interview been conducted in a straight follow the script, ask the questions and listen manner, the result may have been different. Had the interview even more appropriately been conducted by a woman of color who lives with migraine, it would likely have been an incredibly different discussion altogether.

It is okay for this to not be a relatable subject for white people. We do not have to relate and have our own stories to relay on every subject and this interview serves as a perfect example of when we shouldn’t have really been involved.

Direct critique aside, Sheila brought some issues and disparities to the center stage and deserves recognition for the critical points she made. We look at the racial inequities from a bigger picture standpoint rather than a patient centered experience, which I believe adds value in demonstrating this is not an isolated incident we are discussing.

BIPOC get sick more often, have less screenings, get diagnosed later, are treated less aggressively, and buried earlier as Sheila summarized. This combines personal factors, systemic racism and how it impacts care, and a cultural lack of awareness when deciding on care plans. What stood out to me was the discussion of in office care, where lifestyle and diet adjustments may be great ideas but simply do not match the situation of the person seeking care. When you live in a food desert, dietary changes may be a barrier to care.

This gets paired with the still present misconceptions that BIPOC experience pain differently and therefore are either not taken seriously upon reporting or are undertreated and underdiagnosed. For a condition like migraine, this has trackable outcomes showing that these communities have higher rates of severe, more frequent, and more likely to be chronic migraines compared to their percentage of the population. As migraines progress to chronic, treatment options narrow.

Racial stress was also highlighted as a unique experience that exacerbates migraine and was noted that this kind of stress is much greater and not something that is comparable to say stress brought on by a spouse. These are the kinds of distinctions that need to be clear and emphasized.

Finally, representation in healthcare matters and health outcomes improve when working with a physician who is the same race as you are. 5% of physicians are Black, with an additional 5-6% being Latino or Hispanic. This needs to increase, but as heavily discussed in other spheres, graduating more BIPOC doctors doesn’t fully address the inequality when they aren’t being hired. The entire pipeline needs to be redone as the systemic racism runs from the very top of the medical system all the way to the school to prison pipeline.

This interview and migraine advocacy as a whole had an opportunity to truly discuss racial disparities for a disease, that as mentioned disproportionally effects BIPOC, and it instead chose to center and maintain the whiteness of the migraine community.

To close out this piece, I want to highlight discussions that are already being had that help point us to what it is we do need to be talking about.

At the beginning of February, the monthly migraine chat on twitter discussed migraine in the BIPOC community.

This opened up space for us to listen to our community members and learn from them as they discussed their experiences with discrimination while seeking care, representation amongst doctors, unique treatment barriers, additional stigmas brought on by race, and discrimination and representation within advocacy spaces.

Not only did it spark wonderful discussions on each topic but it allowed white members of the community to work to acknowledge different privileges they may not have previously considered. You can find the transcript of the discussion here.

This migraine chat was invaluable and helped to bring the conversation directly to the community itself, forcing many of us to sit with discomfort in realizations and work to do better. It opened up the reality that so many BIPOC do not really feel safe in the migraine spaces we have build because the representation is so minimal and only recently are larger organizations acknowledging the importance of addressing all racial discrimination from systemic issues to personal ones.

This chat serves as a great example of where we can start these conversations and who needs to be leading them.

This is not the only conversation being had. Seek them out, decenter yourself, listen, and take some notes.

I do not expect every complex layer to be addressed in a single talk, or blog, or conversation. This is much bigger than something we discuss once and then check off some “racial bias training” box.

I expect to see many talks with many perspectives covering the wide range of nuance and the vast ways racism in our migraine community connects to racist systems in our entire country and beyond. What none of us need are more talks like this where race is right off the bat reduced and diminished and our advocacy leaders laugh as they discuss historical figures and their fortitude while living with migraine.

This community has a racism problem and our largest events should not strive to keep the racists comfortable on their pedestals.

Racism kills.

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