I was born in 1997. I’m not old enough to fall in with millennials, and I’m not young enough to relate to Gen Zers completely. I’m part of the generation who grew up alongside growing technology, like the birth of the original iPhone in 2007 from the original iPod in the early 2000s. I consider myself a cusper: the generation stuck in the middle of some major world changes.
Having been diagnosed with Friedreich ataxia (FA) in 2008, I didn’t realize exactly what it meant. It was a time of shared desktop computers because we (society in general) weren’t super advanced yet. I was told not to rely on Google to look up anything related to FA unless I went directly to the Friedreich Ataxia Research Alliance website, and even then, reading about a disease that would change my life for the worse was terrifying. I had no one to talk to. Therapy was still taboo, and FA was an even rarer phenomenon 15 years ago. No 1 around me understood what I was going through.
Read more about HCP resources for FA
My parents handled my diagnosis with grace, and I could never repay them for everything they have given up for me since my symptoms came in and changed our worlds. They had to navigate a diagnosis that was barely heard of, much less talked about in their circles. Still, they took the bull by the horns and found new ways to stay connected to the FA community, embracing the challenges as best as they could.
Soon after my diagnosis, my mom found an FA parents group online. The internet was still this big, uncertain part of our lives for everyone back then, so I wasn’t thinking much of this virtual support group. What could a screen do to help someone in my shoes?
It turns out that it could provide a sense of security and safety. In 2009 I met a girl my age who also was recently diagnosed with FA. I can still remember her and her family coming to my house for the first time. She lived in a different state, but we were experiencing some of the same things. Knowing that I wasn’t alone helped me navigate my new normal. We emailed regularly in the beginning, and I even took a few vacations to Tennessee with my family, where I got to hang out with her for a few days and see her “day in the life.”
Fourteen years later, she and I are still in each other’s lives. We’ve grown up together as young women and as young women learning to navigate a rare disease. I have the internet to thank for that.
Even though she was in my life in the form of emails and phone calls (FaceTime wasn’t a thing yet), I still was missing someone’s presence. FA is still a rare disease even if you talk about it verbally, but it’s better to see it to understand it. It is a physical disorder, after all. Besides seeing a few other patients with FA for a couple of minutes at my annual visits, it would be a few years before I interacted with other patients.
It took me a long time to feel comfortable being someone with a rare disease. I couldn’t hide it. I was embarrassed because, for much of my life, disabilities were negative. They weren’t talked about, and they certainly didn’t get any recognition in the media. It was always “I’m praying for you” and “You’re so strong,” as if I was broken and people thought of me as less just because my legs didn’t work like they were supposed to.
It was the late 2010s when I started to acknowledge my disease. I started to accept (in a good way) that I was different. I began to embrace FA because of social media. It was no longer such a devastating way of life to me. The change in my attitude and perspective didn’t happen overnight, but it was a long time coming. The digital age has given me a chance to connect with the FA community just when I needed it most.
A few years ago, I joined a few public FA groups on Facebook. They’re not always very active, but I have posted a few questions and responded to others as well. By interacting with the FA community online, Rare Disease Advisor found me and gave me the opportunity to use my voice as a rare disease columnist to advocate and tell my story.
Other social media platforms have also influenced me. For example, Instagram is a space where I can share information in small pieces. I use Instagram stories often to spotlight physical disabilities. Not everything I post is FA related, but I try to advocate for the disabled nonetheless. I use reels and shared graphics that I find through fellow disability advocate’s pages.
My favorite form of digital advocacy by far is TikTok. I create videos myself but most of them aren’t about FA. Some of them do showcase (in brief snippets) what it’s like to have FA or a physical disability in general. In a previous column, I wrote about hobbies and turning them into coping mechanisms. Creating funny (to me, at least) TikToks about FA is a new hobby for me. I’ve also found “FA tok.” There are so many people out there who use the app to bring light to FA. That’s something I needed when I was younger, and I’m happy to see others posting about their stories. At 26, it still helps me to know that I’m not alone.