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.
About the Author
Clester Oda
As a caregiver to my wife , I believe after years of paying attention to others trying to carry on conversations with my wife , that it is the reason everyone never visits ....even family. Most people don't have the patience or attention span to try to have a conversation with her. I find it frustrating at times myself. Especially since she also has hearing issues. When we both have to repeat ourselves often it does make a short conversation take a long time , and often we misunderstand what was said and has led to problems. Often we resort to communicating through our phones.
I also know it hurts her that no one ever visits because when someone does stop in she imediately lights up , just to see her down again 5 minutes later after they say hi , do what it was they stopped by for, then leave.....no conversation , not really a visit.
Most of society have lost the ability to be friends/friendly as it is then add in the lack of being able to communicate well and that rules out most of the rest of society.
I learned long ago that caring requires effort and sacrifice. Love requires a great deal of caring....I just don't think most people are capable of caring anymore....except for themselves.....can't even sacrice 5 minutes of their time.
Linda Johnson
Another excellent article! You can always put into words my subconscious thoughts.
Art Patrick
Dear Madam:
I read your story about your husband and friends not being able to understand you when talking. Maybe I can help. I am from a very large family that had three sisters that spent years in wheelchairs due to Friedreich’s. They too lost the ability to speak clearly. This was years ago when no one seemed to know what Friedreich’s was. I now have a grandson that developed the juvenile version with symptoms beginning in his mid teen years. Now, at age 32, he was at the point of nobody understanding him. His father can but usually after several tries. His mother got to the point that she could not understand him at all.
Last year I was diagnosed with throat cancer and went through chemotherapy and radiation therapy. This resulted in losing my voice. One doctor referred me to a Speech Therapist. Her treatment got my voice back. I decided I would try to do some of the same things with my grandson. I have been working with him for about 3 months, about 30 minutes once weekly.
While in a session with him, I am able to understand him. Sometimes we even carry on conversations, but it can be labored when he gets tired. His mother is getting better at understanding him. It is slow, but it seems to be working.
My point is this: Speech Therapy may help you. The therapists are able to identify your strengths and weaknesses and help you develop a better way to speak more clearly. The biggest problem with Friedreich’s is that not many people know much about it. I feel lucky that I stumbled onto this. It’s a slow process for us since he is in the advanced stages. But, it's like I told him, “We have the rest of our lives to work on this.”
I hope this can help you. Good luck.