'I literally felt like I was the only brown woman with MS': how this woman found a community after her surprising diagnosis
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,” John, who was 28 years old at the time, tells Yahoo Life. “I wear glasses, but to be even worse with blurriness and not being able to see literally from here down and only in one eye, it was really hard to navigate.”
She reached out to her eye doctor immediately, but had to wait a week for an appointment opening. By the time she saw her doctor, the blurry symptoms were gone. But eye movements were painful for her. John’s eye doctor told her the blurry vision and eye pain may be caused by swelling in the optic nerve.
John realized later that was “just a polite way of saying multiple sclerosis,” referring to the autoimmune disease that disrupts the central nervous system. “So MS really came out of nowhere and shocked me.”
The diagnosis
Her eye doctor recommended that John see a neurologist, as John’s symptoms continued to get worse. She started experiencing numbness from the top of her toes all the way up her body to underneath her breast. “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.
MS really came out of nowhere and shocked me."Moyna John, living with Multple Sclerosis
Dr. Jeffrey Dunn, an MS specialist at Stanford Health Care, tells Yahoo Life that MS affects the central nervous system, impacting the optic nerves — as in John’s case — along with the brain and spinal cord. “Because the central nervous system controls our awareness of everything, MS can really cause any symptoms that a human body can feel, from the top down,” he says, including double vision, fatigue, tingling, dizziness and weakness.
Getting the MS diagnosis was a big blow to John. “It just really kind of shut me down almost because at the time I was 28,” she says. “I'm just starting to live.” John says she was “hitting my prime” and “then here comes MS...completely derailing that.” However, Dunn tells Yahoo Life that the age of onset for MS is younger than most people might think — it’s typically between 20 and 40 years old.
Coping with MS during a pandemic
John, who has a 3-year-old son, shares that she also felt “guilty” and “upset with not being able to parent as well as I should” while managing the symptoms of her chronic condition. When the coronavirus pandemic hit, followed by the lockdowns, John says that made things even harder on her emotionally, while she was coping with her new diagnosis. “I live in New York and it was bad out here,” John shares. “So, I want to lean on my friends. I want to lean on my family. And I can't because of COVID-19.”
She adds: “The first few months of my diagnosis [were] extremely hard because I'm isolated, I'm home. I'm kind of stuck with my feelings because I can't go out and have distractions and interact with people.”
But there was also a silver lining to the lockdowns, which John says “really accelerated my time of processing because I was stuck in it.” She adds: “I didn't get to a point where I was able to kind of shift out of this feeling until I really understood that I'm still me. I just have MS.”
'I literally felt like I was the only brown woman with 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.”
It left John feeling like she didn’t have anywhere to go within the MS community, which made her feel even more alone. “I literally felt like I was the only brown woman with MS in the world,” she says.
Given how MS is often represented, John says, “you would assume that it's a white disease because that's the main face you see.” According to the National Multiple Sclerosis Society, while MS has “historically been thought to primarily affect Caucasians, particularly those of Northern European descent,” research shows that there is a higher incidence of the condition in the Black community “than previously thought.”
Black people may also experience a different range and severity of symptoms, including more frequent relapses, visual problems and balance and coordination problems, according to the National MS Society. John says anecdotally she has found that “Black women in particular seem to have worse symptoms than others.”
They are also underrepresented in clinical trials, “leading to limited data on the effectiveness of treatments in these groups of patients and lack of an evidence-based approach to treatment,” according to a study in the journal Neurology Clinical Practice.
Creating a more inclusive MS community
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 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, 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.”
John has essentially created the community she wished she had found after her MS diagnosis. “This is just to create a space that I wish I walked into when I was diagnosed so that people don't feel alone,” says John. She encourages others with MS to advocate for themselves and lean on family and close friends for support, “because it took me a good amount of time to find a community.”
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Video produced by Jacquie Cosgrove
