When I found out I had multiple sclerosis, I was very neutral. Honestly, I think this was because of two things: I was super busy finishing up a show I was in, and I didn’t know enough about MS to really know what having it meant.
I remember thinking, “Ohmygosh, will other people know from looking at me?” I know now that I wasn’t alone in not knowing much about MS. When I ask someone if they know what MS is, most say “no.” Over the last six years, I have grown so much — I’m not just comfortable telling my story and explaining what MS is, I want to share.
Right before I found out I had MS, I was getting ice cream with my mom. I got home, my doctor called and, bam, I had MS. We went right away to see what the MRI showed. The next day I saw a neurologist. I felt like I was in a whirlwind: I saw more doctors, got more opinions, went on steroids, had another relapse, and so on. I still felt numb in terms of my diagnosis. After three months of asking the same questions, I was burned out. One day, after giving myself a shot, I broke down and cried. All the emotions finally came out, and I felt relieved. It took me some time to fully process everything. It felt like I was getting thrown one curveball after another.
I didn’t tell anyone I had MS until about a month after I felt comfortable being “sure” of the diagnosis. I remember I cried telling a group of my friends. Sharing something so personal with friends who cared about me was hard, but therapeutic. Around two months after my diagnosis I joined a support group for newly diagnosed young adults. To this day, I still talk to the members. That was one of the best things I could have done, to meet others like me. It’s hard having an invisible illness where I get a lot of “Oh, but you don’t look sick.” It was nice to know I wasn’t alone.
I wish I could go back and tell myself that those who love and care about me will support me with my diagnosis. That it’s okay to share it. I also would tell my old self that not everyone is ready to hear about it, and it’s okay if they didn’t receive the news like I thought they would. I am built for this illness, but others might not have the same perspective as me.
My parents, friends, family, and support group helped me keep moving forward and keep fighting. I learned I had to be my own advocate no matter who was in my corner. I am my most important defender and need to keep that in mind. I’ve learned things about my MS that I really could only learn from experience, much to my disappointment. But I adapt. I know that it is okay to say “no,” and I cannot stress that enough. I like to do everything, so it was hard to adjust but very important. Choosing what is most important for me in that moment has become a priority and something to work on.
Bottom line: MS didn’t stop me. It might have altered a few things to my dislike, but I keep pushing. We’ll always come across an obstacle or hurdle, but we are built tough and will overcome these challenges.
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Stuifbergen A, Becker H, Phillips C, Horton S, Morrison J, Perez F. Experiences of African American Women with Multiple Sclerosis. Int J MS Care. 2021;23(2):59-65.
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Taylor J. Racism, Inequality, and Health Care for African Americans. The Century Foundation. December 19, 2019. Accessed April 16, 2023. https://tcf.org/content/report/racism-inequality-health-care-african-americans.
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