With SMA, My Voice Makes Me Feel Self-conscious

Columnist Alyssa Silva struggles to reconcile her voice with her personality

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by Alyssa Silva |

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Does anybody actually like the sound of their own voice?

Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when I ask this question. But for me and many of those outside my family, the answer is a resounding no.

Our voices sound completely different in our heads from when we hear them played back to us — a phenomenon I don’t quite understand. I’ve never liked the sound of my voice, which is, in part, due to SMA. Because of my weakness and extremely low lung capacity, I sound like I’d fit right in with my 5-year-old nephew and his friends at recess.

Of course, I feel the need to preface this by stating that I am grateful to have the ability to speak. Over the past year, my voice has become even weaker. My friends can no longer hear me speak if there is music or TV playing in the background. When I’m tired, I have more difficulty enunciating my words and speaking articulately. I’m breathier. And on some days, I’m too tired to speak at all.

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Embracing the Power of My Voice

At times, it’s incredibly frustrating and upsetting to me. It’s also a reminder that I’m still able to use my words through my voice, and I should. The world needs my witty banter and charm. With SMA, I could lose my voice at any moment.

However, the gratitude I have doesn’t negate that I’m not a fan of the sound of my voice. It makes me anxious. I feel as though it depicts me as this fragile little girl rather than the fierce, strong woman I am.

This could all be my insecurities speaking, but it makes no difference to me. The childish tone of my voice makes me self-conscious. I fear I’m taken less seriously because of it.

I just signed off a call with a huge retailer for my other job, and I cringed when my voice squeaked as I introduced myself. These people didn’t know anything about me. They didn’t know where I came from or how much of a hard worker I am. They just saw a smaller woman with a nasal feeding tube and a squeaky voice lying down, and had to go forward based on these first impressions.

The same goes for anyone I’ve spoken to, ever — whether over phone or video call. While I can’t tell what other people are thinking, I do know that ableism exists. I know from past experiences that some view disabled people as less than others. It’s an unfortunate stigma I’ve dealt with all my life, but it’s shown me I have to prove myself sometimes.

With my voice, I feel as though my inner critic is telling me to keep quiet, to do the silent work and prove myself through my actions. But sensible friends and family in my life tell me otherwise.

I understand that not many people love the sound of their voice. I certainly fit into that group. But I wish I didn’t get so caught up in it. My childlike voice and my bull of a personality aren’t the same. And the people who take the time to recognize that are the ones worth getting the chance to know me.

Note: SMA News Today 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 other 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


Robert Stump avatar

Robert Stump

I hate my voice, especially now that (like you) it is much weaker and more gravelly and people have a harder and harder time understanding me. It has forced me to pretty much be silent during any type of group setting, just so I can have the strength to tell my caregiver what I need during those events. This is really shrunken my world, I can't make new friends in the real-world, and I find it easier to just decline going places with others just because the entire experience is me listening and not able to interact or join in the conversation.

I know it's a somewhat different subject, but all of us on the verge of losing our voices should be offered a way to "bank" recordings so that a voice model can be made for us if/when we eventually need some type of technology to speak for us. This does exist now but getting access to the technology is difficult and expensive. I may not like the way my voice sounds, but I would still try to preserve it if I could!

Blake Watson avatar

Blake Watson

Totally feel this. It’s always awkward wondering about ppl's first impressions of SMA especially when they have no context or warning. Like, SURPRISE! 🙈


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