‘I literally felt like I was the only Brown woman with MS in the world’: This influencer with MS couldn't find anyone who looked like her
Moyna John had been living a normal, healthy life until she woke up one morning in November 2019 with blurred vision. While she could see clearly with the upper half of her eye, everything was blurry in the bottom half. “I was immediately terrified,”
“My symptoms were pretty severe enough that [the neurologist] pretty much said I had MS right there,” says John. However, the doctor still recommended that John have a series of tests done at the hospital, including an MRI. “But after they reviewed my MRIs, they said it was unnecessary,” she says. It was clear John has MS.
John recalls looking for support groups and resources to better understand MS, but she noticed “a recurring trend that a lot of support groups and resources were predominantly White,” says John. “And not that I have an issue with it. It's just kind of hard to be able to share and be vulnerable in these moments where you kind of feel like the odd man out in every group I joined. I was the brownest and I was the youngest, and it was just a weird dynamic.”
While John says the MS community is “very warm and receptive” she says, “I felt like it was lacking being inclusive.” So John decided to do something about it after her fiancé Nick encouraged her to tell her story and create a space for herself. John started an Instagram account, @lifewithmoyna, followed by a blog, Life With Moyna, and says that people have been “really receptive.”
Several people have reached out to John through her blog and her Instagram account, which has more than 9,000 followers, telling her that they were trying to “find someone that looks like me or understands my story,” adding that those moments make her feel good because “belonging is great.”
Video Transcript
MOYNA JOHN: The MS community, it is very warm and receptive, but I felt like it was lacking being inclusive. I literally felt as if I was the only brown woman with MS in the world. You would assume that it's a white disease because that's the main face you see. And it's surprisingly not.
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I'm Moyna John, and I'm an MS influencer and blogger. I was diagnosed officially with multiple sclerosis on December 31, 2019. Before that, I lived a regular life. So MS really came out of nowhere.
Everything just kind of popped up one morning, and it was a lot of pain and discomfort. By the time I made it to the doctor, I explained my symptoms. He said, it may be swelling in the optic nerve, which is just a polite way of saying multiple sclerosis.
To actually formally be diagnosed, it shocked me to my core. At the time, I was 28. You know, I'm just starting to live. I have a new son.
My now-fiancee, like, he's helping me sit down on a toilet. He's helping me get dressed. Will I walk in the future? Am I bound to a wheelchair? Is my son going to have to take care of me? You know, it was a lot of feelings.
I didn't get to a point where I was able to kind of shift out of this feeling until I really understood I'm still me; I just have MS. I started looking for support groups. And I noticed that a lot of support groups and resources were predominantly white.
In every group I joined, I was the brownest, and I was the youngest. It's kind of hard to be able to share and be vulnerable in these moments where you kind of feel like the odd man out.
I spoke to, you know, my fiancee. I was like, is no one brown with MS? Like, this crazy. I'm like, am I the only one? And he was like, well, if you feel like you have a story to tell, and you feel like you need some space, then create it.
I said, you know, I mean, let me post something on Instagram. And people were really receptive and really warm. I got a lot of MS patients reach out and say, I was looking to find someone that looks like me or understands my story. It's just we're all so divided that you don't really find it at first.
Black women are being diagnosed at faster rates than our lighter counterparts. Thankfully, I will say that my diagnosis journey was very quick. I felt like I was very seen.
But I have, you know, spoken to other Black women, and other people in general, that symptoms are not being taken seriously. Unfortunately, they're kind of taught to believe this narrative that Black women are stronger, and that we feel pain less. And the darker you are, the harder you have to advocate.
MS on a day-to-day basis definitely looks different for everyone. Some days, I wake up, and I'm absolutely fine. I remember what life is before MS. And then some days, I either wake up with physical issues, or I wake up with cognitive issues.
Blogging is great. Influencing is great, and I do love it, but I still have a MS, too. So some days, like, I don't know if I should do this anymore. Maybe I should just give up.
And then someone will reach out and say, hey, I just got diagnosed. I'm so scared. You know, you've given me hope. That just kind of reminds me of what the purpose of all this is for, to create a space that I wish I walked into when I was diagnosed.
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