Life With an Uncontrollable Voice

My voice first failed me nine years ago. I was 17. It came on slowly at first. I would have trouble pronouncing certain sounds. Words beginning with vowels became more difficult to say than words starting with consonants—“apple” was harder than “window.” When I tried to talk, it would feel as if something was caught in my throat, or an invisible hand was pressing against my Adam’s apple. Then the hand would let go and I could speak normally again. Over the course of a few months, this phenomenon became more frequent, but there was no pattern to the voice breaks and no indication of what brought them on. My voice became shaky and strained. I sounded nervous when I wasn’t. Sentences weren’t fluid anymore. Instead, words stopped right before they left my mouth, breaking off and falling into dead space. It became an effort to speak, and soon I didn’t want to anymore.

The moment when I realized that something was undeniably wrong with my voice happened in my eleventh grade World Cultures class. I was giving a group presentation. I was never nervous in front of these classmates, or my pleasant teacher, Mr. Saveikis. But on this day, my voice broke off. I cleared my throat, started again. But my voice didn’t recover. I couldn’t control what was happening to the sound that escaped my mouth. I couldn’t pick up where I left off. I panicked. I could hear Mr. Saveikis asking me what was wrong. I wanted to yell out, I’m fine! But my voice wasn’t fine. I wasn’t fine. The voice that finally came out of my mouth wasn’t mine. I finished the presentation and left the classroom in a hurry. My cheeks burned hot with embarrassment. Tears welled up in my eyes. I made it to the bathroom, shut myself in a stall and cried.

I felt like my mind was losing control of my voice. I later learned that was exactly what was happening.

A few months after the onset of my strange symptoms, I was diagnosed with spasmodic dysphonia, a rare neurological disorder that causes muscle spasms in the vocal cords and affects one to four people in 100,000, according to the National Institutes of Health. The result is choppy, unstable speech quality. I was told there was no cure but treatment was available in the form of voice therapy and shots of botulinum toxin, or Botox, directly into the vocal cords. But even with treatment, my doctor told me that my voice would never be the same again.

I had lost my voice.

Like other physical characteristics such as height, weight, and hair color, our voices help identify us. The sound of our voice influences how other people perceive us—possibly even more than the words we actually say.

“Our voice is our ambassador to the rest of the world,” says Dr. Norman Hogikyan, director of the University of Michigan Health System Vocal Health Center. “Often a first impression is based upon a person’s voice.”

For people with voice disorders, a part of our identity is stripped away. Our weak voices can be unfairly associated with emotional sensitivity, a lack of confidence, lower intelligence, and sometimes, physical illness.

In the 1990s, Hogikyan developed the voice-related quality of life, or V-RQOL, test along with his colleagues at the University of Michigan Health System after realizing how interconnected the voice was with patients’ confidence and self-perception. The test is similar to the quality of life measure that psychologists use to gauge the overall well-being of patients. The V-RQOL is meant to assess the collective emotional, social, and physical functioning issues related to the voice in people with voice disorders.

“What I realized was we didn’t have a good way to really understand what a voice problem meant to an individual,” Hogikyan says.

Some patients—like me—who have the “adductor” type of spasmodic dysphonia, in which the vocal cords slam together respond well to Botox treatment. (In “abductor” spasmodic dysphonia, the vocal cords spread too far apart.) Hogikyan measures these patients’ voice-related quality of life before and after treatment with Botox. On average, patients rate their voice-related quality of life around 30 on a 100-point scale before treatment. After Botox treatment, patients rate their voices around 80 on average.

Botox works by essentially paralyzing the vocal cords, stopping the spasms and temporarily restoring the voice. But the benefits only last three to four months at most, and along with the treatment comes physical, emotional, and social side effects. For the first week or two after the injection, my voice is soft and I’m unable to project loudly. Speaking requires a lot of physical effort. I actively avoid bars and parties during this time period. In college, when I found myself in noisy atmospheres, I told people that I was getting over a cold and I had lost my voice. I still say that sometimes.

After the initial breathy period, my voice sounds as normal as I think it did before the onset of my disorder, but after nine years, I don’t really remember what my voice used to sound like. Then, after about 13 to 14 weeks, the quivering slowly starts to infiltrate my smooth Botox voice.

When the Botox starts to wear off, my voice quality starts declining. I get tired easily when speaking. I prefer emailing sources to talking on the phone. I tense up during editorial conference calls when it’s my turn to say what I’m working on. A former editor who was based in a remote office once asked one of my colleagues if I was nervous to talk to him because my voice always sounded shaky over the phone. She told him my voice was just like that, and he never asked me about it.

Naturally, my mood swings follow the up-and-down nature of my voice fluctuations.

In fact, a 2013 study appearing in the Annals of Otology, Rhinology & Laryngology found that voice disorders have negative effects on overall health, including poorer emotional well-being and social function. People with voice disorders were more likely to have physical or emotional problems interfere with their normal social activities than people without voice disorders. Nelson Roy, a professor of speech and language pathology at the University of Utah and one of the co-authors of that study, says people with voice disorders would rather retreat into silence if it’s effortful to speak or if their voice quality is poor.

“If you start reducing speaking, there are social effects and there can be occupational effects. What seems to be driving that is the overall physical effort of speaking,” Roy says. “In terms of effort, that’s the toxic part of a voice disorder that probably leads to higher levels of disablement.”

When it becomes more effortful to speak, the quality of the voice decreases—and so does a speaker’s confidence. When someone is less confident, they’re probably less likely to socialize and more likely to doubt themselves when doing things that others do with ease. Their work may suffer. They may decline invitations from friends with no explanation. It’s perhaps no surprise then that people with voice disorders are often wrongly perceived as having social or intellectual deficits.

In a study published in March in the American Journal of Speech-Language Pathology researchers found that when employers heard recordings of speakers with spasmodic dysphonia and a control group without spasmodic dysphonia, the listeners associated more negative qualities with the impaired speakers.

“We found that there was a pretty strong correlation between these negative perceptions and effort of speaking,” says Derek Isetti, lead researcher of the study at the University of Washington.

Listeners rated people with spasmodic dysphonia as being older, less confident, and having more tearful speech than control speakers. Isetti is now studying how employers react to two different recordings of a woman with spasmodic dysphonia before a Botox treatment, when her symptoms are more severe, compared to a few weeks after Botox treatment, when symptoms are mild. The recording is meant to simulate a job interview, in which the speaker answers a series of questions about her work experience and what she’s looking for in a new position. Employers who hear the “bad voice” recording almost exclusively focus on the quality of the speaker’s voice, saying that she sounded nervous or like she was a smoker, instead of her answers to the interview questions. By contrast, in the “good voice” recording, Isetti says employers don’t even mention the sound of the speaker’s voice.

Isetti’s study confirms what those of us with voice disorders already believe to be true—we’re often treated or perceived negatively because we sound a little different from everyone else. 

But I do see one bright spot in the research. Roy says studies have shown that the longer people struggle with spasmodic dysphonia, the more they begin to adapt and live with the disorder. Adapting often means deciding how much to tell people about your voice disorder and how much to withhold. 

Once, when I volunteered at a local theatre company, the stage manager I was working with asked me what was wrong with my voice after being introduced just 15 minutes before.

“Are you sick?” he asked.

“Yes, I lost my voice,” I told him.