My FA Status Update: It’s Complicated

I had a wonderful childhood, yet I knew how hard my parents worked to make that happen. So, when I became a grown-up, I felt like I had fairly realistic expectations. I planned on working hard and living a fulfilling life, raising a family, and building a fun village to do my life with. I never expected things would always be easy, but I also didn’t expect it to be this hard.

Friedreich’s ataxia (FA) came into my life when I was just 25 and completely rewrote my expectations. Now, after dealing with eight years of disease progression, I can honestly say that my life is substantially more complicated than I ever anticipated.

I am physically and emotionally drained by the end of nearly every day. I fight against my very cells every minute to stay as healthy, mobile, active, and forward-moving as I can be. Daily survival with FA is exhausting on its own, but when you add in the work associated with the rest of life outside of FA, it’s almost too much to bear.

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For example, when I was more emotionally fragile, the littlest thing — such as losing my favorite pair of sunglasses or having to stop for a red light when running late — would send me over the edge. I would explode, and say, “As if I wasn’t already dealing with enough with FA! Now I have to deal with this, too!”

When people would ask how my day was, I would immediately think about how awful having FA was, which would cloud my answers. I would respond bitterly that, “Life is unfair because I have FA,” ignoring all of the good things in my life. When people would ask about my vacations, weekends, or life in general, I would grumble about FA. I realized that FA had taken over my life, and I was making it the center point of everything. It ranked higher than my roles as a friend, wife, and mother.

I’ve come to see how unhealthy that approach was. I was living in a perpetual state of near boiling, and the slightest inconvenience was enough to set me off and make me think that everything in my life was ruined.

So, I have learned to adapt my approach to life yet again. I now try my best to separate my FA-related struggles from my common daily struggles when it’s appropriate to do so. I have noticed that when I adjust my mindset and expect that all things FA-related will be hard, the other curveballs that life throws my way seem to be less disruptive.

While FA is an important aspect of my life that people take a sincere interest in, I know that they are not always asking “Kendall the FA patient” for updates. I now make a conscious effort to not always answer from an FA-centered point of view. I am always willing and ready to talk about FA, but I now wait for specific questions before diving into that often dark and difficult topic that I know is difficult for people to relate to.

I am realistic, and I know that I can’t always compartmentalize FA. This huge monster in my life refuses to be stuffed into a neat little box, tucked away for storage. It is messy and often demands attention. FA crosses over into nearly every single aspect of my life and will sometimes dominate it. In those cases, the short answer to, “How was your day?” will be, “It’s complicated.”

And that’s just fine.

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.