An Unheard Voice: Amplifying Diversity in the MS Community

Guest post by: Moyna John

Some days, I feel physically and emotionally fine; other days, I feel severely depressed. I miss when life was “normal”. I miss when I didn’t experience a laundry list of MS symptoms each week. But I am learning to make the best of my new normal.

I was diagnosed with MS in December 2019, and needless to say, I was shocked. It’s one thing to suspect it, but to be formally told by a doctor was an experience that will be etched in my mind forever. During my initial flare up, I experienced partial loss of vision in my right eye and complete numbness from underneath my breasts to my toes. My body was numb. I felt numb. I shut down and tried to pretend that my diagnosis wasn’t real.

After a few months, the numbness left my body, and that’s when the floodgates opened. I cried, I screamed, I lived in my anger. Dealing with a new diagnosis during the pandemic forced me to process everything in real-time. Having nowhere to go and nothing to do only left me with my thoughts, and I felt as though I would never get over it. But as hard as it was, I believe the pandemic led me to cope faster.

A few difficult months later, I’ve come to terms with my diagnosis. I’ve learned to embrace my MS and work to find positivity where I can. I still experience numbness, stiffness, vertigo, depression, fatigue, and more, but I value my mobility because I remember the days that I could not walk without help.

After my diagnosis, I looked into MS support groups, trying to find a space where I felt comfortable talking about what I was going through. I kept seeing the same recurring theme – the groups were made up of an older, Caucasian crowd and I felt like I was all alone on an island. I recall venting to my partner, Nick, about how I felt like I never saw anyone with MS who looked like me. That’s when he suggested that I create a space for people who feel the same way. I opened a new handle on Instagram called @lifewithmoyna and set up a blog at lifewithmoyna.com to help add representation and a diverse perspective to the community.

It was tough to tell people about my diagnosis at first. I felt ashamed and assumed my family and friends would not understand. My “coming out” moment was my first post on my new Instagram account, where I shared with the world that I have MS. I was terrified, but as soon as I posted, I received so much love and respect that I felt as though I finally found a community that truly accepted me.

Through @lifewithmoyna, I hope that I can help other Black, Indigenous, and people of colour (BIPOC) find a space where they feel comfortable. I want to help other Black women who may be where I was a year ago. It’s already hard enough living with an unpredictable disease, so finding a safe place where you feel seen is a refreshing change.

Representation in the MS community is critical because people naturally gravitate towards what they can relate to. Seeing another person living with the disease that looks like you might make it easier to cope. You might talk more openly knowing this person or group will better understand you.

Here’s my advice to people living with MS who may feel unheard: sometimes, you have to create your own space if that space does not exist. A newly diagnosed woman reached out to me through Instagram recently. She was in the hospital and had been diagnosed the day before. As expected, she found everything about MS to be overwhelming and she was terrified. But she found my account on Instagram and didn’t feel as alone, knowing there was another Black mother sharing her story. I exchanged messages with her while she was in the hospital and have continued speaking to her since. That moment reminded me that I’m doing this for an important reason. What I’m sharing matters and it’s helping others across the world, whether I know about it or not.

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