Everything I read after my MS diagnosis seemed to erase Black women, especially millennial Black women, from the narrative, writes WAI co-founder, Lauren Work.

In everything I read after my MS diagnosis, Black women, especially millennial Black women, seemed to have been erased from the narrative.

At the end of my freshman year of college, blurry vision in my left eye took me from the student health center to an eye doctor, then to an emergency room.

Each provider who saw me that day was just as confused as the one before.

The student health physician attributed my vision problems to needing prescription glasses. The eye doctor assumed I had “reparable nerve damage.” The ER physicians were so stumped that they decided to admit me for further tests by a neurologist.

I ended up spending the next 3 days in the hospital, going through countless tests and receiving few answers. But, after MRIs revealed inflammation on my brain and spine, I heard the words “multiple sclerosis” for the first time.

I had never heard of the disease, and the neurologist’s technical explanations and apathetic demeanor certainly didn’t help. I stared at him, dumbfounded, as he explained the disease’s symptoms of fatigue, joint pain, blurred vision, and the possibility of immobility.

For someone who’s rarely at a loss for words, it was one of the few times in my life when I’ve been speechless. Recognizing how overwhelmed I was, my mom, who had caught the first available flight to be by my side, asked the very obvious question: “So, does she have multiple sclerosis or not?”

The neurologist shrugged and responded, “Probably not.” He instead attributed my symptoms to the stress of attending an elite university, prescribed some steroids, and sent me on my way.

It wasn’t until 3 years later when I finally received my diagnosis of multiple sclerosis (MS), an autoimmune disease known to disproportionately affect Black women.

Since then, I’ve recognized my experiences with chronic illness to be tied to my Blackness. As a recent law school graduate, I spent 3 years studying the ways in which systemic racism can be veiled in complex legalese but have direct effects on Black and low-income communities’ access to high-quality healthcare.

The lack of representation made me feel alone and ashamed

In the months following my diagnosis, I obsessively researched everything that I could.

I was moving to San Francisco to start my first job, and I had plans of applying to law school. I needed answers on how to thrive while fighting a disease that causes the body to literally attack itself.

From diets to alternative treatments to exercise regimens, I read it all. But, even after I read everything I could, nothing spoke to me.

Black women were, and still are, largely nonexistent in research and clinical trials. Their stories were rarely amplified in patient advocacy groups and educational literature, despite more severe disease progression.

In everything I read, Black women, especially millennial Black women, seemed to have been erased from the narrative.

The lack of representation made me feel ashamed. Was I really the only 20-something Black woman living with this disease? Society already questions my abilities at every junction. What will they say if they know that I have a chronic illness?

Without a community that I felt truly understood me, I decided to keep my diagnosis a secret.

It wasn’t until a year into my diagnosis that I came across the hashtag #WeAreIllmatic, a campaign created by Victoria Reese to unite women of color living with MS.

Reading the stories of Black women thriving despite their MS pushed me to the verge of tears. This was the community of women I had been yearning for, the community I needed to find power in my story.

I found Victoria’s email address and immediately reached out to her. I knew the work was bigger than a hashtag, and I felt called to be a part of building something that would end the invisibility and racism that had kept me silent.

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Working to address the systemic racism in the U.S. healthcare system

In early 2020, Victoria and I founded We Are Ill as a 501(c)(3) nonprofit organization to continue the #WeAreIllmatic campaign’s mission. We’ve continued to grow a network of more than 1,000 women, and we’re cultivating a space for those women to not only share their story with MS, but to also learn from others.

When working with our industry partners, we require that they go beyond simply creating content that addresses the concerns of the community we serve, but that they recognize how their practices have disparately affected Black women. And that they do the work to change them.

In the months following We Are Ill’s founding, COVID-19 hit. The disproportionate impacts of the pandemic on the Black community brought to light the systemic racism and social inequities that have always underscored our healthcare system.

The pandemic has only amplified the importance of this work, and thankfully, We Are Ill isn’t doing it alone:

• Health in Her Hue is leveraging technology to connect Black women with Black doctors who are committed to eradicating the racial health disparities that have led to higher rates of maternal mortality for Black women.

• Drugviu collects health-related information from communities of color so that their medical history can be better represented in clinical trials to create more inclusive treatments.

• The “Myelin and Melanin” and “Beyond Our Cells” podcasts highlight the stories of those living beyond their chronic conditions.

This is not OK

Since entering the advocacy space, I’m regularly asked what advice I have for Black women living with MS. And honestly, I have a lot:

• Don’t let up on your doctor.

• Require practitioners to listen to you.

• Ask for a treatment that works for you.

• Find best practices to reduce stress, if you can.

• Eat healthy, if you can.

• Exercise, if you can.

• Rest, if you can.

• Believe your story has power, and invest in a supportive community.

But I’ve started to realize that a lot of these pieces of advice are rooted in how to navigate a racist system.

It’s not OK for Black women to be misdiagnosed or gaslit by medical professionals.

It’s not OK that medical research participants are overwhelmingly white (less than 2 percent of cancer clinical trials funded by the National Cancer Institute include enough minority participants to provide useful information, for example).

It’s not OK to live with the stresses of discrimination, a chronic illness, family, employment, and overall livelihood.

It’s not OK to live without healthcare. It’s not OK to feel worthless.

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