Feeling frustrated is a regular part of my life with FA
I'm typically OK at managing frustration, but I could do better
I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a vast understatement.
For example, when I was 9 months old, I could walk. I know I fell a lot, but I could walk. At some point in my late 40s, I couldn’t walk anymore. Majorly frustrated, sad, and angry are some of the emotions I feel about that. I could share a litany of frustrations — both major and minor — caused by living with FA.
I say this recognizing that I am lucky to have been able to walk for so long after my FA diagnosis. Many of my friends with FA could no longer walk early in their teenage years. I understand!
I often say I am not lucky to have FA, but I am lucky in how I have it. My degeneration caused by FA has been very slow.
Today’s source of frustration
As I write this, I am frustrated because Microsoft Word‘s dictate function isn’t doing what I ask it to. (Even with all the errors, I still find it faster to write using this function than to manually type. Overall, I recommend dictation, though I know it won’t work for everyone with FA, especially those whose speech is severely affected.)
So I screamed curse words at my computer and it typed a bunch of “#”s. Then I laughed at myself for three reasons: 1) It’s just silly to scream at an inanimate object; 2) I had to laugh at all the “#”s on my screen; and 3) I know MS Word will get things wrong every time I dictate.
If I were unable to laugh at myself, it would be easy to get stuck in frustration and not appreciate the good things in my life.
Sometimes, when I find I’m taking things too seriously, I visit the Funny or Die website or find a good baby video. Did you know people are hardwired to smile at babies?
I think my frustration is legitimate. MS Word would likely understand me better if my voice were unaffected by FA. Just knowing my frustration is valid helps it dissipate. Even better, when my writing friends acknowledge that this dictation issue must be frustrating, their affirmation helps the frustration dissipate even more.
I could use some more help
Expressing our emotions — without hurting someone, of course — is super important. Repressing your emotions is not good. The University of California, Berkeley’s Greater Good Magazine explains: “Suppression gets held in the body and creates a host of downstream effects, including anxiety, depression, stress-related illness, all the way to substance abuse and suicide.”
When I get frustrated, I try to remember what I can and can’t control. In this example, I can’t control how MS Word understands me. However, I can make my future writing life easier by repeatedly using the MS Word dictate function to train it to better recognize what I’m saying. Knowing what we can control is beneficial for anyone, but I would argue it is especially critical for those of us with chronic diseases.
Could I handle my day-to-day frustrations better? Probably. I do a lot right, but a counselor might be able to help me feel frustrated less often.
Today, as I sat down to write this column, I was going to use transferring to and from my wheelchair as an example of how I get frustrated. Obviously, frustration is such a regular emotion in my life that simply writing induced it!
I would love to not be frustrated so often and am therefore committed to finding a counselor.
Note: 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.
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