Young Latina With MS Finds Community via Social Media

If you knew that you were about to go through a life-altering event, what advice would you give to yourself?

I think about this question a lot when I look back on my experience of being diagnosed with multiple sclerosis (MS) as a child.

I was 11 years old when I first began experiencing symptoms. I was walking home from school with my sister and suddenly the entire right side of my body went numb, and I felt significant weakness. At first, I brushed it off as the type of feeling you get when your leg or arm falls asleep, but the problems continued, leaving me and my family completely puzzled.

After months of struggle and confusion, I finally got my diagnosis at a hospital three hours from my hometown. You would think this brought relief to my family, but for me, this meant a whole assortment of challenges were coming my way.

Learning About MS Has Been Complicated by Language Barriers

Both my parents are immigrants who speak only Spanish, and the lack of medical professionals who spoke Spanish presented itself as a huge language barrier. It also didn’t help that my parents had never heard of MS, and I remain the only person in both my immediate and extended families to be diagnosed with this autoimmune disease.

Despite those challenges, my parents made their best efforts to help me get treatment, see specialists, and learn how to live a full life with MS. My mother has been a total rock star and my biggest cheerleader every step of the way, whether that’s driving me to cities hours away, staying by my side during hospital stays, or simply comforting me during my darkest moments. I remain in awe of my parents’ ability to navigate this diagnosis, and I am so lucky to have them by my side.

I Had to Step Up and Ask the Questions I Needed Answered

Even with my parents’ support, I knew I needed to be my own advocate. As a young first-generation Latina with MS, I had to step up, do my research, and ask questions.

This wasn’t easy, since many of these ideas were new to me, but as I began to build a better understanding of this disease, I was able to ensure I got access to better care.

I must confess, I haven’t made the best decisions sometimes, I’ve made many mistakes, and I continue to learn from my MS every single day. However, I learned to embrace the mistakes, adapt, and move on to the next challenge. Sometimes scary concepts like high-risk medications, unexpected side effects, endless medical procedures, and so much more have been daunting, but I feel proud of how I’ve handled these experiences nonetheless.

Maybe it was because I was diagnosed at a young age, but I have been able to adapt and persevere, even in moments of heartbreak and disappointment.

Most of the time, I try to walk into my doctor’s office with a smile on my face, come prepared with a long list of questions, and make my thoughts and concerns known.

Sharing My Experiences Helps Others and Helps Me

Up until recently, I rarely shared my diagnosis with anyone, even close friends and family. It was at the start of the global pandemic, in early 2020, that I decided I should finally start sharing my journey, with the hope it could help others who might be feeling as lonely and lost as I felt back when I was first diagnosed.

Two years later, I am still very much shocked, but most importantly, so happy, about the love and support I have received because I decided to share my experience living with MS. I have had the opportunity to work with incredible organizations and share my story about navigating life with an MS diagnosis and deal with the many barriers I faced for nearly 20 years.

It’s become such an important mission for me to work with Genentech’s #MSVisibility program to highlight the disparities there are for those diagnosed with MS who come from underserved communities and lack the proper medical resources and privileges.

Social Media Has Helped Me Find a Community

I have also found the power of community, thanks to the people I have met on social media platforms who have chronic illnesses and can relate to my struggle. It’s a beautiful thing to know that this roller coaster of a disease can bring people together, create friendships, and build incredible bonds.

I’ve met and connected with people from around the world who truly understand what I go through on a day-to-day basis with MS. They understand me and make me feel seen. This is something I never imagined would be possible for me. Growing up, I never met others who looked like me, were part of my community, and had the same life experiences as me and also had MS.

This is why it’s crucial that I continue to share the good, bad, and ugly of what life is like while living with MS. Having the opportunity to help and offer support to those recently diagnosed who may be confused and searching for answers and community is so important.

I’m grateful for the support I have received in just these last two years, and I can’t wait to continue my efforts to help my amazing MS community, as candid and as real as I can be.