Social Media Gave Me a Voice

Being diagnosed at 19, I didn’t have much of a voice. Let’s be honest–I was still coming into adulthood, figuring out who I was, and my place in this world when I was diagnosed with NMOSD. But everything changed. I felt even less comfortable in my own voice. I believe one of my first classes in college was public speaking. I don’t believe I passed. If you were to ask me to do it today, I passed with flying colors and here’s how that came to be.

My first Instagram post

I've written about the friend who encouraged me to make my first Instagram post, sharing my rare disease story.

On that first post, I wrote the caption over, and over, and over again. I couldn’t quite articulate what I wanted to say nor can I get the right words out to describe how I was feeling, but I knew that whatever I said was going to ring true to someone upon making that first post. Having zero followers, my Instagram account shot up to the hundreds. Within just a few short days that first post had over 52 comments from other people living with rare disease, people that had found me or my post through my hashtags and decided to connect with me. To this day, I still consider all of those people my friends.

I posted a picture of me receiving plasmapheresis, and that’s when I began to find other people with rare diseases, or the same diseases as me. In that moment, I knew I had to utilize my voice to not only make myself feel less alone, but how I could get that to trickle into the rest of the community.

Sharing my NMO story

For years, I shared my story, and I not only gained a lot of people that I now call family. But, I also started to create a community for people who felt alone. Social media has been the driving force for all of the accomplishments I’ve made in my advocacy journey. I love advocating. I’ve been so fortunate to have been invited to several different support groups and I’m proud and honored to say that I have been on every advisory council board for all NMOSD approved medications.

Motivation to advocate more

I actually ended up stopping school when I got really sick because I mentally didn’t have the capacity to handle it. I felt less than human. I couldn’t even tell people that I was still in college because I wasn’t it was embarrassing almost I felt like I wasn’t ever going to amount to anything nor would I ever be able to make my foundation be the way I want it to be.

That is what drove me to work harder to advocate harder. And just 2 years ago, I went viral on TikTok for sharing my story with having a rare disease. When I posted the video and closed the app, I didn’t expect much. My TikTok had never really garnered over 10,000 video views, but to my surprise after waking up from surgery, I saw an unlimited stream of notifications from TikTok. I was overwhelmed. I’m not going to lie. The video had reached 160,000 views, which were way more than I had had on any of my videos combined. I was surprised, baffled, and shocked – all of the above. I found at least 20 different myelin oligodendrocyte glycoprotein (MOG) patients with just 1 video, and the video wasn’t even done circulating the web yet.

I think back to that time when I was so scared to post my first Instagram post, let alone a video talking about my struggles. It’s so uncomfortable sharing your weaknesses with the world. As much as I want to say that all the comments were nice, they weren’t. But I will say that 98 percent of the comments are so pleasant and enjoyable to read. Even to this day, I still get comments on that video. Of course, the other videos posted around the same time started to go viral as well, including me giving an in-depth version of my story: my life as a track athlete and even the battery I have in my butt, which I have become known for as "the girl with the battery." Did I choose the name? No, but I’ll stick with it.

Since then, I really felt it was my job to be an inspiration to others and to stick around a little bit longer. The amount of people who I met who have had a rare disease still continue to blow my mind. It’s hard to fathom that now 4 million people have seen that video and my video has been re-posted on several other social media sites.

It isn’t easy putting yourself on the Internet because with being on the Internet comes a lot of good but also a lot of negativity. I posted that video in such a vulnerable time and thought about the potential risks of the backlash I would get. Of course, I got the comments saying it "wasn’t real," or it was "all in my head" and I was "being dramatic." You know, the usual, what NMO patients get. 

But thankfully, I have created a superior group of individuals who find it necessary to stick up for people such as me who have a rare disease. I think back to the time when I was so scared to post my first Instagram post vs. where I am now: I get to be a full-time advocate and nonprofit founder!

Sometimes, the scariest decisions give us the greatest outcome. I can confidently say I have a voice and will continue to be a voice for the voiceless.