My Experience with Spasmodic Dysphonia – My Thoughts on the Good Life
The Facts
Everyone experiences some kind of struggle in life. I’d like to share with you one of my mine.
I have a rare voice disorder called spasmodic dysphonia. I’ve had this condition for about ten years. I’ve been diagnosed by several ear, nose, and throat doctors and speech language pathologists.
Here’s a medical description of the condition from the National Spasmodic Dysphonia Association:
“Spasmodic dysphonia (SD), a focal form of dystonia, is a neurological voice disorder that involves ‘spasms’ of the vocal cords causing interruptions of speech and affecting the voice quality. SD can cause the voice to break up or to have a tight, strained, or strangled quality.”
It’s a Paradox
Living with spasmodic dysphonia has been a frustrating experience. But despite the struggle, there has been a silver lining. The experience has made me more compassionate toward the struggles of others. I’ve become a better problem-solver. And ironically, my voice disorder has improved my ability to communicate, because I have to be more creative and succinct. Spasmodic dysphonia has also made me more courageous, because I’m determined to live a fantastic life despite this challenge.
I don’t usually share the fact that I have spasmodic dysphonia. I prefer to just live my life and do my best with my unique voice.
Why I’m Sharing
But I’m now writing about my experience with spasmodic dysphonia for three reasons:
- I want to more fully express myself
- I want to help others by sharing what has improved my voice quality and attitude
- I want to learn how other people have improved their voice quality and attitude
Voice Problems Out of Nowhere
My voice problems started about ten years ago. It was an unpleasant surprise, because I had spoken clearly and easily all my life. Then all of a sudden, I lost control of my voice. Speaking became extremely difficult. I couldn’t fix the problem, no matter what I tried.
My voice sounded permanently tight, strangled, and broken. Sometimes I could barely speak at all. It was like I had a warped, permanent, and unexplainable form of laryngitis combined with a stutter. My voice was the worst when I was tired, stressed, or dealing with seasonal allergies. I had difficulty communicating, working, socializing, and being understood. I couldn’t get my words out smoothly. It was embarrassing, confusing, and incredibly frustrating.
When I lost my voice, it was devastating for me. I felt disabled. Communication is extremely important to me. I love having conversations with people. I enjoy public speaking and had previously worked as a TV reporter for several years.
At the onset of my symptoms, I was working hard at three jobs: coffee shop barista, self-employed photographer, and eBay seller. My new voice problems were crushing to me psychologically. It made work very difficult. I had to stumble my way through sales phone calls to find wedding photography jobs. I struggled to speak loud enough to be heard while working in noisy coffee shops. I experienced a lot of private emotional pain. I was afraid my severe voice problems would last for life. This was a rough time for me, but I did have hope.
Treatments Worse than the Condition
Determined to fix my voice, I went to multiple speech language pathologists and ear, nose, and throat doctors. These experts examined me, put cameras through my nose to videotape my vocal cords, and diagnosed me with spasmodic dysphonia. These practitioners told me there is no cure. I was told voice therapy wouldn’t work.
But they said I might find temporary relief with botox injections in my vocal cords. I’ve seriously considered botox treatment, because it works pretty well for some people. But I decided not to try botox because of the downsides: It often causes a whispery voice and difficulty swallowing for several weeks after injections. The improved voice only lasts for a few months, and then the spasmodic dysphonia symptoms return. So the painful injections must be repeated every several months.
I’ve scoured the internet for spasmodic dysphonia miracle cures as well. Some online medical sources suggested another treatment option: a rarely-performed neck surgery to cut a nerve that would most likely regenerate. But I wasn’t willing to risk the surgery, since success wasn’t guaranteed, and it could potentially leave me with a worse voice.
Home Remedies
My treatment options looked pretty dismal. Spasmodic dysphonia is rare, so most treatments for the disorder are not well-researched. I figured it would be worth it to attempt some home remedies and use trial and error to get the most out of my voice. I’ve tried many potential solutions, including plentiful water, healthy eating, and yoga, to name a few. I greatly improved the strength of my voice when I stopped taking Zoloft, which had given me dry mouth. My voice quality was better, but still somewhat choppy and strained.
Thriving with Spasmodic Dysphonia
Encouraged by my improved yet imperfect voice, I made a decision that I would continue to pursue and expect professional success no matter the quality of my voice. This was about seven years ago. I went into traditional sales work, selling vacations and then medical laboratory testing, which requires a lot of time speaking on the phone, plus in-person interactions, and some public speaking.
Spasmodic dysphonia makes speaking on the phone somewhat difficult. Usually people don’t seem to notice. When someone occasionally asks what’s wrong with my voice, and I’ll just say, “I’m a little raspy today, but I’m okay.” But in general, I think people like that I’m a little imperfect, and I’m not a slick salesperson. And whenever I fear the phone, I just tell myself to be courageous and make the call anyway despite fear. That’s the strategy that works best for me. I’ve also done some recent public speaking that went quite well.
There is a bright side: spasmodic dysphonia has forced me to slow down and be more concise, deliberate, and enthusiastic in my communication. I remind myself to have confidence in my abilities. My voice usually isn’t perfect, but it’s good enough to get the job done well. My employers and colleagues seem to value me.
My husband, and the rest of family and friends have also always been supportive. I’ve found that the closer I am to someone, the less likely they are to notice anything unusual about my voice. Sometimes people seem genuinely surprised when I tell them.
My toddler son loves when I talk with him, read books aloud, and sing nursery rhymes to him. I’m quite certain the quality of my voice is a non-issue to him.
I try to be kind to myself, not take myself too seriously, and have a sense of humor about my situation.
Further Improvements
In recent years, I further improved my voice quality when I stopped taking hormonal birth control, as well as Zyrtec. I started using a neti pot for allergy relief instead. Also, despite warnings that voice therapy wouldn’t work, I did find one speech language pathologist who disagreed and worked with me. I’ve found some benefit to modifying my vocal rhythm, practicing sounds, and using breath control. My voice still isn’t perfect, but it’s better than it was before. It keeps improving.
Not Alone
Because spasmodic dysphonia is rare, I’ve met very few people with the disorder. But there are a couple people in the media with spasmodic dysphonia, who have been wildly successful. This is really encouraging. Dilbert creator Scott Adams shares his journey overcoming spasmodic dysphonia with surgery in his book, “How to Fail at Almost Everything and Still Win Big.” Robert F. Kennedy Jr. has spasmodic dysphonia, yet he is a successful attorney, activist, and public speaker. So I’m in good company.
The Future
Moving forward, I’ll continue to make the most of my perfectly imperfect voice. I’ll keep trying to improve my voice quality and find a cure. But no matter what, even if my voice gets worse, I’m not going to let spasmodic dysphonia stop me. I plan to speak, write, work, and express myself fully and successfully. I’ll just consider my unique voice part of my imperfect charm.
Struggle and Happiness Can Coexist
Thank you for reading Thoughts on the Good Life. Although very few people have spasmodic dysphonia, I know every person has their own distinct struggles in life. This reality reminds me of one of one my favorite quotes: “Be kind, for everyone you meet is fighting a battle you know nothing about.” Now you know a little about one of my struggles. I wish you the best with yours. And I wish you great happiness, contentment, and success along the way.
UPDATE: December 30, 2018
It’s been about nine months since I posted this blog article. I’m so happy I went public with my spasmodic dysphonia on my blog, with family and friends, and at work. It felt great to “let the cat out of the bag” and let people know why my voice is a bit wonky.
As I mentioned in the above article, spasmodic dysphonia has been a monkey on my back for about 10 years, causing me frustration, embarrassment, and anxiety. But by talking about my condition openly, I’ve taken away much of its power, and I have minimized my negative feelings and maximized my feelings of expansive potential for the present and future.
I’ve done recent public speaking for my blog and my work in medical sales. It all went very well, even with my perfectly imperfect voice. I read to my son often, and he loves it. I don’t spend much time these days thinking about spasmodic dysphonia.
I’d still love to find a total cure. But my voice is slowly sounding better and better, and I’m making the most of the voice I have. Since publishing the above blog, I’ve stopped using the neti pot. It has benefits, but I believe it may have contributed to some bad sinus infections last winter.
Instead, I’ve found significant voice improvement by staying off Zyrtec, which I took for 10 years, and I’ve replaced it with some natural supplements: N-Acetyl-L-Cysteine and Vital Nutrients Aller-C, which is a blend of high-dose vitamin C, Quercetin, Bioflavonoids, and Bromelain. I am not selling these supplements, and I get nothing for recommending them. I’m just sharing what has worked for me. This combo has certainly helped improve my spasmodic dysphonia, and it has also reduced my colds, sinus infections, and severe seasonal allergy symptoms.
I think it’s incredibly important to get plentiful sleep, eat a plant-based whole foods diet, keep stress to a minimum, and treat myself well in general. I’ve got to say that, because it’s true. Helps the voice.
If you have spasmodic dysphonia, I hope this information is helpful to you. Please remember you can live a full, fabulous life with or without spasmodic dysphonia.
Thank you for sharing your experience, Sarah! Your article resonates with me and is so encouraging.
My onset of SD was about 3 years ago when I was doing my national service in Korea Army. I thought it came out of nowhere, but in hindsight there were a few factors that caused SD for me. They were, 1) the conflict between my introvert nature and the pressure from the military, 2) how much I loved singing and the way I tried to change my singing voice, and 3) the respiratory infection I had to suffer for a couple of weeks which probably came from the germy environment of the base. I believed these three factors somehow worked together to bring me SD.
My voice was the single best thing I had always been proud of, and it was gone in the matter of a few weeks, leaving me with a weird, morbidly ugly voice that crippled all my ability to speak. With SD, I got more and more inhibiting and anxious around people. I felt huge anxiety even in front of family and my closest friends. After I got discharged from the army and I began to slowly isolate myself, and that was when I lost many of my friends. I didn’t speak a word for weeks, and for the first time in my life, I experienced true loneliness. God, I can’t count how many times I screamed “why me?” in the middle of the night.
Thankfully I’m much better now because I’ve learned a few tricks to use in times of “an SD crisis” and I am with very much accepting people. (But still, a huge crisis comes every now and then whenever I am under pressure and people are quietly waiting my me to say something.) Knowing that my psychological fitness affects severity of SD, I have also developed interest in meditation and many sports. What’s more? I learned to speak English thanks to SD because I thought my Korean-ness when speaking a non-native language kinda covers up uncontrollable spasms, and also I’ve had to do my research on SD on many medical websites.
All in all, I think SD made me stronger and helped me become a better person who listens to others very well and carefully selects what to say. Again, thank you for sharing your experience and I wish only sooth sailing on your SD journey ahead 🙂
Hi YY, thank you so much for your comment. It’s amazing that we’ve had similar experiences with SD on opposite sides of the world. It’s fascinating to hear your story. We’ve obviously both experienced great difficulty with SD, but at the same time I’m so happy we’ve both mined our experiences for any and all positive benefits. I wish you big success in your life. I’ve known people with SD who do amazing things by any standard, and we’re no different. The sky is the limit. My attitude is that we can seek cures, but in the meantime, we can play fully in life, personally and professionally, exactly as we are.
Thank you for sharing your experiences with spasmodic dysphonia. I also have this condition and have had it since about 1998. My experiences are similar to those that others have had. However my voice loss was very severe and I had considered learning sign language. After a few years of visiting with and being treated by a large variety of speech therapists and doctors I finally made contact with a doctor at the University of Utah who began treating me with Botox. For me it worked very well, if not perfectly. I was able to talk with a nearly normal voice. It did take a couple of weeks for the Botox to begin to work and my voice to become functional again, but that was a little price to pay compared to the final results. For me the treatment has needed to be repeated every six months. My experience with the Botox is that it isn’t a particularly painful or difficult procedure to receive. If you have a good doctor the procedure takes only several minutes to complete.
Hi James, thank you so much for your comments on your experience with spasmodic dysphonia. That’s interesting and excellent Botox has worked so well for you. Sounds like it has been life-changing. That’s wonderful. I still have spasmodic dysphonia. My voice is very functional, but I still have issues with it all day. Maybe I’ll try Botox one of these days. My biggest concern is that it could interfere with my job. I’m a full-time salesperson, and I’m very reliant on my voice. It concerns me there’s a few weeks where with Botox the voice gets worse, before it gets better. Maybe I could just carefully time my activities around those relatively quiet weeks. Thank you so much for sharing your experience James. All the best!
Great posting, Sarah, My line on living life for the better is, “It takes courage to live life as who we really are, not the bravery needed in mortal combat, but the resolve to take life as it comes and make the best of it.” Since it takes courage to live well, our greatest contribution to others may be en-couraging them to live their best.
Thank you Gordon! That’s absolutely beautiful and inspiring. I love the idea of prioritizing courage. I’ll keep accepting reality, living my life the best I can, and encouraging others to live their own beautiful lives!
Sarah, thank you so much for sharing your story! I also have spasmodic dysphonia, and it has been really hard road for me. I was so happy to find your encouraging message, though, and I have also been really trying to see the bright side, and to live my life the same way I always have. There are so few stories about spasmodic dysphonia, and I would love to hear more about the specific tips you have found to help you, especially with public speaking, speaking in noisy settings, or while you’re under stress (especially in a professional setting!). I have found that giving little effort (hard to do!) and talking at a higher register helps sometimes, but not reliably. Anyway, it is so nice to hear that you have been able to be so successful despite the challenge, and so courageous in your professional life! It has been really inspiring for me. Thank you, truly!
Hi Kate, many thanks for your excellent comment!
Sorry to hear you have spasmodic dysphonia too. It’s certainly a challenging condition to live with. But with your thoughtfulness, curiosity, and willingness to research (you found me somehow!), I know you’ll be fine. I’m sure you are living a beautiful life, and you have a sunny future. I’m happy my blog article is helping you see the bright side of spasmodic dysphonia.
I’ll share a few specific things that have helped me. Feel free to email me for more detail at sarahcraig1000@gmail.com.
Public speaking: Courage is more important than confidence, so I take public speaking opportunities even if I’m afraid. I reframe fear as excitement. I focus on my message, the audience, and the individuals I’m speaking to or with, rather than myself. I try to keep it conversational and genuinely enthusiastic. I also found the book “Presence” by Amy Cuddy helpful, which suggests power poses before public speaking, and feeling comfortable taking up space and time with your voice. I remind myself that people value kindness, warmth, and trustworthiness more than perfection. I remind myself that I’m a smart person with important things to say that can help and entertain people. I’m not a perfect public speaker, but I do enjoy it. If you want to hear my spasmodic dysphonia in action, I’ll be speaking live on Facebook with Dr. Teralyn Sell about The Luck Factor book Wednesday, April 18 at 7 PM – 8 PM CDT: https://www.facebook.com/events/2030337677241975/
Speaking in noisy settings: I usually avoid truly noisy settings, because it’s hard to compete with the noise. But I do venture into loud places sometimes, such as class reunions, packed restaurants, or bars to play trivia. I even sing karaoke occasionally, even though I’m terrible. I generally struggle to speak in these high-noise settings. But it helps to sit close to people, gesture and use facial expressions, use words that are easier to say, get involved in fun conversations so I can relax, mention “sorry my voice is raspy today” if I feel like I must acknowledge it, and forgive myself for not being perfect.
I’d also recommend being honest about your spasmodic dysphonia to your employer, close friends, and family, if you want to. It can be embarrassing and scary to bring it up, but it can also be freeing. But at the same time, I don’t focus on SD too much. I don’t want it to be the focus of my life. There are many people I’m close to, with whom I’ve never discussed my SD.
The one speech language pathologist I’ve met who believes in voice therapy is Connie Pike of Free to Speak. I met with her once, and she gave me some helpful hints and hope: http://www.freetospeakvoicetherapy.com
Hope some of this helps.
All the best to you Kate! Remind yourself regularly of the bright side of having spasmodic dysphonia. And be sure to live a full, beautiful life no matter what.
Thanks for sharing your experience,
Sarah
Thank you for sharing. I think it’s great you had he courage to say no to treatments and instead choose to live with the challenge and while observing what small things impacted it in order to make lifestyle changes. How interesting that allergy meds and birth control were affecting it! So much more to be learned about our bodies, the immune system, and the impacts of chemicals.
Thanks for your thoughtful comment Shawna! Yes, home remedies, trial and error, and working with what I’ve got has worked best for me so far. Also, yes, giving up most medications has also been a real game-changer too. But I respect each person’s path. Every situation is unique, and I agree there’s so much to learn. Have a beautiful week Shawna!