Say that again? The frustration of communicating with FA
A little effort and empathy will go a long way toward understanding me
I recently told my husband, Dave, a silly dad joke, but I had to repeat the punchline three times. By that point, it wasn’t even funny — if it ever was. Dave was simply trying to understand me, but I was frustrated that I had to put so much effort into making my stupid joke understood. I’m much better at laughing at dad jokes — or any jokes, really — than I am at delivering them, but the fun of telling one is gone when you have to repeat it multiple times.
Trying to communicate with Friedreich’s ataxia (FA) is difficult, as the disease causes me to slur my words. I often hear, “What?” “I’m sorry?” “Say that again,” and similar phrases more often than I’d like during simple conversations. Speaking may require extra effort, and people might unintentionally interrupt or talk over me. I don’t always remember that the person politely asking me to repeat myself is just trying to understand me. We are both doing our best to communicate.
It does infuriate me when people act like they understand me, but don’t. I can tell by their responses that they didn’t understand me, but even then I have to check myself. Are they pretending to understand or did they simply mishear me? Trying to understand me doesn’t make me angry, but not making the effort to do so does.
We all need to have our voice heard
Most of the time, people do understand my slurred speech, or dysarthria, except when I’m tired or on the phone. FA has only slightly affected my hearing. I do struggle to hear the person next to me when there’s a lot of background noise, but it’s fine otherwise. My poor motor control makes typing very slow, but not impossible. FA has not affected my vision.
When I text, I mostly use talk-to-text. It’s much faster than typing, and most of the time, my phone understands me. If you get a weird text from me, it’s because I didn’t proofread it carefully.
I do get frustrated by my inept communication, but I can get the job done. I have friends with FA whose severely impaired voice, hearing, vision, and motor skills mean communicating is almost impossible. They have great difficulty speaking, can’t hear, are legally blind, and have motor controls that make typing extremely difficult, if not impossible.
The inability to express oneself clearly can impact social interactions, relationships, and self-esteem, amplifying the emotional toll of the disease. Over time, these barriers can discourage people from participating in social situations. We all need a voice. Communication is a fundamental human need.
So, if you have FA, give yourself the time and patience you deserve to be understood. If you care about someone with FA, take the time to listen and understand our frustration if and when we experience it. I need my husband’s empathy when my poor speech results in me cursing out the pillow or the nearest object.
As imperfect as it is, I can still communicate. In the world of FA, that is lucky. I continue to try to use my voice to share meaningful messages within my FA and rare disease community. Still, at the comedy club, you’ll find me in the audience, not on the stage.
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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