Inclusion, diversity, representation – these words are everywhere. We are living through a time of social change where people of all backgrounds are not only working to be seen and accepted but are being sought out to give their perspectives. From POC and those in the LGBTQ+ community to individuals with disabilities and chronic conditions, our stories are being told more frequently and our presence on all types of media platforms is increasing.
However, society tends to treat each of these people as though it is a mutually exclusive entity and forget that people can, and often do, check more than one box. This was exactly the problem Moyna John, a young Black mother from New York City, found out after her own multiple sclerosis (MS) diagnosis at the age of 28.
Moyna’s MS surprised her. Sudden blurry vision in one eye preceded a numbness in her toes that, after only a few weeks, spread all the way up to her chest. In just over one month, she went from being healthy to being told she has MS.
While she was eager to connect with others and learn about the disease she knew little about, her options were limited amidst a global pandemic. Moyna turned to the internet but when she looked for support, she felt isolated within the groups she found and struggled to see herself within the predominately older White adults in these groups. She says, “I never saw anyone with MS who looked like me. I felt like I was out on an island.” She wanted to connect with other people who understood her existence on multiple levels, not just her diagnosis.
Unable to find a space she felt comfortable in, her partner encouraged her to create one. Once again, Moyna took to the internet and created an Instagram account (www.instagram.com/lifewithmoyna/) and a blog (lifewithmoyna.com), in the hopes of connecting with other POC who also have MS. And she has done just what she set out to do.
I was able to connect with Moyna and ask her some questions about her experiences and the work she is doing to bring different voices to the MS conversation.
Can you tell us a little bit about why representation matters? Why wasn’t it enough to connect with others solely based on your shared diagnosis?
I am asked this question a lot. The answer is clear: everyone wants to feel seen and heard. Representation provides that for chronically ill POC. Often, we are left out of the narrative that is chronic illness – we are hardly featured in infomercials or ads, there are barely any POC in support groups, and not enough research is done on how these conditions affect us. This is making having an illness that is not visible even more isolating.
It is essential to know that you are not alone. Being able to see other people that look like you and have similar backgrounds is comforting. In my experience, MS has been depicted mainly from a White perspective and that needs to change.
You say you felt lonely when you were searching for support after your diagnosis – as though you were the only Black woman with MS out there. How does it feel now knowing that another Black woman doesn’t have to feel that loneliness because you created a space for them?
It feels good to know I have created a space where other women with MS can share their experience. I wanted to show others that they were not alone. Often, I will chat with my new followers and most have shared their sense of relief after finding my Instagram page or shared how they felt so alone and did not have a place where people looked like them. My goal is to expand and possibly create a support group and I’d like more of my followers to interact with each other.
Do you think that feeling unrepresented within the MS community inhibits people from getting care and support that could benefit them?
I think in general there is a lack of proper care being provided for POC. Often, we are misdiagnosed or unheard, which leads to being undiagnosed for years. For the longest time, MS was believed to be a predominantly White disease, but it’s not. A 2013 Neurology study found that African American females are diagnosed with MS at a higher rate than previously thought. Research also shows that our MS may be more aggressive so further studies are needed to determine why MS for Black females can be more aggressive.
How are you ensuring your blog and community is inclusive to anyone who wants to join?
I have taken the time to make the space that I created warm and inviting. It is understood that I am catering predominantly to POC but if anyone from another ethnicity wants to join, they are more than welcome.
How can medical organizations speak to and include a broader and more diverse population?
Representation is key, show that there is a desire to include a more diverse depiction of illness. Also, a POC being involved in the outreach process is important. Unfortunately, sometimes organizations can be tone deaf.