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.
I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA).
FA is a rare, progressive, degenerative neuromuscular disease that few people have heard of, and even fewer are truly knowledgeable about. As an active mom of two who uses a walker due to FA symptomatic progression, I attract a lot of curiosity.
When I was diagnosed with this disease I had never heard of at age 25, I decided then and there to share openly throughout my journey to raise awareness for my disease and to encourage others facing adversity. It has been a wild ride. FA has opened doors for me and given me spotlight opportunities. I have made new friends and learned so very much. It has also closed doors, ripped away opportunities, strained friendships, and changed me to my core.
Being an open book has its limits, however. I don’t publicly share every single nitty-gritty detail of my life with FA in the name of “raising awareness” for several reasons — the main one being that there are too many details. I don’t want to overshare the bad and drown out the good in my life. Basically, I don’t want to constantly throw a pity party for an audience.
The other reasons I keep some symptoms “behind closed doors” are for my audience. A symptom like poor balance that requires a walker is understandable and people can generally grasp that reality. When I mention chronic fatigue, people are less clear about this invisible symptom. People try to relate and think about a season of life when they were really tired, but usually, that season has passed. People can’t relate to my being chronically exhausted no matter how much I sleep, how often I exercise, or how well I fuel my body. Because of this, I don’t often bring up the topic of my chronic fatigue.
Sometimes sharing the reality of my disease can become pretty negative and depressing. There aren’t medical silver linings to a degenerative disease like FA. When I share the specifics, I feel as though I am publicly airing grievances and that negativity breeds pity. That is not my goal. In sharing the reality of my life with FA, I want to raise awareness and offer a ray of hope through adversity, not make people sad or scared about a medical tragedy. I want to make the world brighter, not darker or scarier.
I choose to share my journey with FA in the hopes that it will help advance research that will lead to a treatment (and eventually a cure) for myself and my fellow FA community. I am not trying to be a medical journal, public lab-rat, or that “disabled girl” everyone pities. Like everyone else, I have many facets to my life. I am not solely defined by FA.
When you walk through a progressive, relentlessly degenerative disease like FA, things get dark. I do share the hard, real, and raw moments because I believe it is important to paint a clear picture. There are more dark moments in which I am battling my reality and my fears that I choose to keep behind closed doors. There are also monotonous moments, “normal” moments, happy moments, victorious moments, etc. My days are not solely dictated by FA.
If you really want to know what life with FA is like behind closed doors, scroll through my collection of “My Darling Disability” columns and my social media posts. Multiply those glimpses of my very real highs and lows by 50 … and that is a typical day with FA. Good, bad, and ugly. Chaotic and beautiful. Real.