I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you.
When I was 23, I began noticing that my balance was different than it used to be. I fell while playing sand volleyball, I stumbled while lifting at the gym, and I felt physically drained every day. No matter how aware I was of my footing or what leg strengthening exercises I did, I just felt off-balance.
So, I did what most nonmedical professionals do: I Googled my symptoms. Google and other internet sites convinced me I had an inner ear problem, so I made an appointment with a highly rated ears, nose, and throat specialist. After thorough testing, he declared my ears were fine and not the cause of my symptoms.
I felt so silly for getting all worked up only to be told I was “fine.” Because I was given the all-clear from a doctor, it was time to move on and live like the healthy person I was.
Yet my symptoms kept progressing, and then became too severe to continue ignoring. I began pursuing medical answers again. I decided to stay off the internet to avoid self-diagnosing. I wanted my general physician to lead me down the path to answers to these new and worsening symptoms.
I was relieved every time a test came back negative, but I became increasingly frustrated at still not having an answer. My doctor was frustrated, too. She agreed that my combined symptoms indicated something “big picture” was going on, and we decided that a neurologist might be the right leader for the rest of my diagnostic journey.
When all of the tests keep coming back negative, it’s tempting to convince yourself that you’re being dramatic and seeing problems where there aren’t any. It’s easy to write things off as “not that bad.” It’s hard to listen to your body as you continue advocating for it.
Getting diagnosed with Friedreich’s ataxia (FA) was certainly unexpected. Finding out that I had a progressive, degenerative, genetic disease wasn’t my goal — my goal was to get an answer. My answer just happened to be FA.
While I wouldn’t have wished for FA or chosen this disease, I felt relief when I got my diagnosis. My progressive symptoms now made sense. I wasn’t imagining things or being dramatic. All of my worrying, Googling, and internet browsing led to an answer. I listened to my body and advocated for myself. Getting an answer was validating.
Now that I know what is happening to my body, I can manage my expectations and find new ways to adapt and move forward. Labeling my symptoms and researching my disease helps me manage my health going forward, too. I can decipher what is or isn’t related to FA and seek help through appropriate channels.
Yes, I am strangely relieved to have my diagnosis, but that doesn’t mean I am going to accept what it has in store for me without a fight. I am thankful for the FA community that came to the same conclusion after their collective diagnoses. I draw strength and motivation from my community.
I will continue fighting for my future as well as the future of the rest of the FA community. I will continue to advocate for myself.