Facing MS as a Black woman
After diagnosis, I wanted to learn as much as I could about living with multiple sclerosis. But online resources were empty, as if Black people couldn’t get it.
Victoria Reese, Media professional, CEO of We Are ILL - March 13, 2023 | 6-minute read
Victoria Reese
Media professional, CEO of We Are ILL
This is my new life
As with any new diagnosis, you immediately go online to research everything you can so you know what to expect. And when you do that with multiple sclerosis, you see celebrities who have passed, like Richard Prior.
And you think, “This is my new life.”
I’m going to use a cane. I’m going to be in a wheelchair. I’m only 25.
That’s scary for anyone. And it was tumultuous for me. Not in terms of care but emotionally. It was emotional coping that I had to do.
I continue living with MS while trying to learn more about it.
Day one of my MS journey
There was just so much to take in all at once. I don’t think my doctor intended to be dismissive, but he looked at me and saw that I did not look like I was from Beverly Hills. There are only a few Black people in my job as a talent agent in L.A. He says, “You must be stressed, ma’am.”
I don’t think he meant to be cold, but when he told me it was MS, he printed out three sheets and told me to read up on it. Then he sent me on my way.
That was day one of this long MS journey. Now I know: Bedside manners are important. Support groups are not their line of work, but I wish primary care physicians were better equipped for those moments. I’m sitting there thinking, “A simple piece of paper is now my future.”
That was hard, especially after taking antidepressants for months because he thought my early symptoms were more a mental health thing.
Trying to do research
So I tried to educate myself. Emotionally, it was hard, just the gravity of it. At first, I couldn’t read more than two sentences because it would make me sick to my stomach. I couldn’t get through the paperwork from my doctor, either.
I wasn’t in therapy at that time. Even now, I still have the thought process that many in the Black community have: Seeing a therapist means you’re crazy. Black people don’t do that. You go to sleep or drink ginger ale. You pray about it.
Of course, that’s deeply rooted in the fact that those were the only resources we had for generations.
Therapy was not something I sought to cope with my new normal. But it was on me to start educating myself. I did my research. Or tried to.
Even now, I have the thought process: Seeing a therapist means you’re crazy. Black people don’t do that. You go to sleep or drink ginger ale.
Online resources came up empty
Articles would come up, but they were not specific to Black people. The most recent study at the time was from 1990! Here, it was 2012.
Nothing was out there to communicate with Black people about living with MS. And that made me so angry. I’m looking for articles, and there’s always a stock photo of old women or white people. They were mimicking what they knew, “they” meaning the health care industry.
Here I am trying to Google what’s going on, and it’s just empty as if Black people can’t get it. I’m a Black woman who’s trying to see myself and understand myself, but the verbiage and science at the time said things like, “MS is more prevalently found in Caucasian women from this age up.”
I’m lost. I’m here. I'm unsure of what's next.
And I’m sick of it. I knew I couldn’t be the only one because there were a couple of Black celebrities who had it – Montel Williams and Richard Prior. But there had to be others who felt the same way as me. That’s when I started becoming active and involved in MS walks.
I posted on social media about my diagnosis. I wasn’t trying to create content or anything, but I felt comfortable being vulnerable and sharing this new world of mine. And once I did start sharing my MS experience, that’s when things started to change.
People started to respond.
My multiple sclerosis story
- Read part 1 of my journey, My earthquake: Getting diagnosed with multiple sclerosis
- Read part 3 of my journey, Creating an MS community for Black women
- Read part 4 of my journey, Advancing MS research and representation