“Over a decade ago, I experienced numbness in my legs, and it progressed until I had no feeling in my left foot. I remember my neurologist talking about MS while I stared at the Parkinson’s poster that was plastered on the wall behind him. I have MS? I tried to keep a straight face, but my brain was working overtime. What does living with MS look like?
I struggled with my initial diagnosis but when I came to the realization that my MS was manageable, I was able to move forward. When given an MS diagnosis, it is the perfect time to allow ourselves to be humble and open to receiving help. I think people need to be mindful that showing vulnerability can be more difficult for Black women in general.
Black women often feel pressure to always act strong. It comes from historically being treated as tough and not deserving of special care or soft emotions. Essentially, we haven’t been afforded the benefit of being the ‘damsel in distress’. A lot of this learned thinking has been solidified in us by the time we become adults. However, I believe that mindset is counterproductive when dealing with MS.
In my case, I’ve generally been well supported throughout my MS journey. I have an excellent support system that includes my daughter, extended family, friends, and healthcare team. I was concerned for many years that my diagnosis would affect me negatively due to a lack of understanding of MS by colleagues, bosses, or even my personal relationships. Once I decided to be open about my MS, I found that my fear was unnecessary.
The moment I decided I wasn’t going to let my MS hold me back from achieving my goals it made me less overwhelmed. I gave myself the grace to achieve attainable goals. I celebrate every win and that gives me the motivation to keep moving forward.
My MS diagnosis has also allowed me to make meaningful connections with other MSers across the globe, including other people from the Black MS community. It allows people to see that MS looks different for different people.
I think it’s important to show representation in the MS community because when I was first diagnosed, I wanted to see people who resembled me, living with MS. Even though I know MS looks different for different people, I realized the need and importance to feel connected to and understand the plight of someone who has a similar life experience. I found it so helpful when trying to understand what living with MS could look like for me in the future.
I think every month should be a collective celebration and learning opportunity for all humans, but I recognize that we are still far from that being a reality. I strongly believe that if we don’t know our history, it’s impossible to recognize the cycles that require positive change. For that reason, I am grateful for Black History Month as an opportunity for all people to learn more and help relate to the Black lived experience across the world.
While there are some shared experiences among all MSers, your journey is unique to you. I encourage you to share your experience because your journey could help someone else. You have a voice, and it deserves to be heard!”
All people living with multiple sclerosis deserve to see themselves represented in the stories we tell. We know that it is much more than just one month, week, or day and are committed to representing and amplifying voices from diverse perspectives all year round. Share your experience living with or being affected by MS by emailing firstname.lastname@example.org