Life with MS

Creating a Group

By Victoria Reese



In January 2012, I moved to Los Angeles, and in May of that year, I turned 25 and was living my best life! But by September, I began experiencing numbness in my legs, which lasted several months. It had gotten so bad that, at times, I had to crawl to my car or sit in stairways until someone could come to get me. After a while, I went to my primary care physician and he was confident my symptoms were because of the stress I was dealing with at work and prescribed me antidepressants. Internally, I knew it was something else. 

After a few rounds of MRI on my legs, one was performed on my brain and spine. An x-ray came back showing nine lesions on my brain. My doctor handed me a printed description of multiple sclerosis on a sheet of paper. It was a perfect example of how Black women are often dismissed, misdiagnosed, or ignored by medical care providers. Once my neurologist confirmed the numbness I'd experienced for months was an MS exacerbation, or relapse, I hid the papers under my bed like I did my feelings. I avoided them until I was ready to deal with it. On the other hand, I was grateful I listened to my body. Had I not, I would've encountered one flare-up after the next, all the while taking antidepressants as a remedy.

When I felt ready to research my newly diagnosed condition, I'd scour through articles and stumble on ones only with images of older white people. If I did see someone of color portrayed in educational materials, they did not represent me. They were either more senior, immobile, or men. I needed additional support that was outside of my family. But, seeking external help wasn't an innate next step for me. I'm a Black girl born and raised in Detroit, by a single Black mother. We don't "do" therapy, support groups, national societies, or anything else. That's a cultural characteristic that stems far back for deeply rooted reasons and a history of medical mistrust. Black people tend to stray from those types of support.  

Eventually, I attended an in-person support group meeting, and all I remember thinking was how, even in a room full of people with MS, I still didn't fit in. At its end, I noticed the few Black people in attendance coming together. A community within another, we saw ourselves in each other. For the first time while living with MS, I finally saw myself. That's precisely why representation is important. 

In 2017, I created a social media awareness campaign called #Weareillmatic because I saw a void and knew not to wait for anyone else to fill it. I also knew no one could relate to Black women like a Black woman, even if they tried. My vision was to unite Black women and build a community that myself and others like me could lean on. I was 25 years old at the time of my diagnosis. I needed to see a mother, a wife, and a career woman who was also battling MS while still being the phenomenal Black woman that she is – all things I aspired to be. Little did I know, hundreds of other Black women needed the same thing. Most of them had been navigating their MS journeys for decades alone, while being left out of the narrative. Finding community matters!

In 2020, we've transformed what was simply an awareness campaign into what is now. We Are Ill is a 501(c)(3) patient advocacy organization with a vision to redefine what sick looks like for Black-identifying women living with MS. Our goal is to build a fearless community and create culturally competent educational materials. By facilitating more robust discussions on the experiences of Black women living with MS, WAI is changing the narrative of MS not only to improve the overall health outcomes of Black women but also to eradicate this disease. 

 

According to a 2013 study in the U.S., we have a 47 percent increased risk of MS over white women. All the more reason the inclusion of Black women is necessary. Among African Americans, women had triple the risk of getting the disease compared to men. Generally, Black women deserve to be better taken care of by society. 

For centuries, we've been perceived as too strong with a higher tolerance for pain or distress; thus, receiving less care medically. I think Black women have become so accustomed to this treatment that we've developed a "superwoman" complex, and as leaders in our families, forget to prioritize ourselves. Now we are shifting that behavior, advocating for our healthcare, and demanding to be seen and heard. As an organization, We Are Ill plans to be at the forefront, making changes we'd like to see, gaining our community's enthusiasm, and encourage them to join us.  Connect at weareillmatic.com.