How to tell others about your chronic voice disorder
Updated: May 7, 2020
How do you explain your SD or chronic voice disorder to others? Or do you?
This is a topic I have personally struggled with in my journey with SD - particularly in the early stages. Who do I tell? How do I even explain this when I don’t fully understand it myself? Even the name is hard to say and hard for people to understand. How much info do I include when I tell them? Who do I tell or not tell? What will others think when I tell them? Will they understand? Will they think it’s “weird” or think less of me? Is it better if I just try to hide it and pretend that it's not there? Maybe if I work harder I can make it go away and no one will ever no I have this...
These are all questions and thoughts that would frequently come up in many situations as I struggled to fully accept my SD. I was not at the place yet where I fully accepted the disorder myself. I was ashamed. Embarrassed. Felt like it made me "less than" and felt that it was best to try to do everything I can to hide it. And I think that’s why the decisions to tell others were so hard.
I was ashamed of how my voice sounded. I cringed at the reactions of others as I struggled with such strain to speak. The more I tried to hide it, the more exhausted I got (physically but also mentally and emotionally) and it clearly just made my symptoms worse with the tension and strain. But what was the harder part of that was that others (even those close to me) didn't know what internal struggle I was dealing with. I was hiding a huge part of myself. A chronic voice disorder like SD is so challenging emotionally and psychosocially and I though that others knowing what I was dealing with was too vulnerable or made me "weak".
Well, secret’s out that hiding it was not a good plan in any way for me! All it did was make the shame of having the disorder grow, made me work extremely hard to make my voice sound perfect (which caused more strain, an extreme cognitive focus/effort, and pure exhaustion).
I probably did not tell many of my friends or even family members for a good 5 years post-diagnosis. Thinking about that now seems so incredibly long.
It takes a lot of vulnerability to be very open about it. But that vulnerability leads to acceptance of the disorder and of who you are with the disorder. It can break down this big wall that's in between you and others and can bring you closer with the people you care about.
I remember vividly many situations that I struggled with figuring out whether to tell people.
My graduate school supervisor when we were doing speech/hearing screenings on each other. Do I tell them and risk people seeing me as not qualified to be a speech therapist because my voice was never going to be a “model” voice? (Once I finally told her it was after the speech/hearing screenings, which I clearly did not pass within the “norm” voice quality. She had an amazing reaction, and told me that some of the best SLPs she knows have stutters or have gone through similar things themselves because they understand it). I realized I was anticipating such negativity that was all in my head. I could have saved myself a lot of anxiety during that speech eval by being upfront about it! And that others can recognize it as a strength not a weakness.
My close friends. They clearly heard my voice change and sometimes I would strain so much that it would physically make me uncomfortable. Which of course made others more uncomfortable because I was uncomfortable. But what made it more uncomfortable was that they had no idea what was going on. Because I didn't tell them. It put a barrier in between us. I attributed it to my voice but it was the fact that I wasn't open with them about a major component of my life. To be honest it took me a while to even tell some of my closest friends. It was almost harder to tell my closer friends. Would they think of me differently? Would they think it makes me weird or not want to hang out with me anymore? Would they be embarrassed to hang out with me in a group? (Answer: Not at all. They were my friends whether my voice sounded clear or strained).
People I went out on dates with or met for the first time. I developed SD at 22. The prime of socialization, trying to be "normal" and go to restaurants or group outings, meeting others, trying to date! Initially I never told individuals I would first meet or those I dated. Now, I use it as part of my story and it often comes out in my first few conversations with someone. Usually, it’s from a question of so what is a passion of yours or what made you become and SLP? For others, it may come out even before the first meeting or date if your voice is not where you want it to be and you know you’ll feel self conscious about it.
What have I learned?
I’m overall pretty open about it now. I spread awareness and education and feel that this acceptance and telling to other people led to this weight lifted off of my shoulders. Did this happen immediately when I was first diagnosed. Not at all. It was a LONG journey to this point. A journey of acceptance of my SD. That the SD did not define me. I chose not to let it run my life and started to develop a strength once I shifted my perspective. Now it IS part of my story and has shaped me into the person I am, but in a good way. And I tell people because it's part of who I am and my journey and to hide it would be hiding a part of me.
The funny thing was, once I started telling people about this, their reactions made me more comfortable in telling other people. Actually most of their reactions were unremarkable. Some asked a few questions out of curiosity. Some said they actually could tell that there was a change in my voice but wouldn’t think it’s a “voice disorder”. Some said they thought that’s just how my voice was and didn’t think much of it. Some thanked me for telling them.
Overall, people were thinking WAY less about me and my voice disorder than I had spun in my mind. Sure, I bet they noticed it didn’t sound right but if I was comfortable and didn’t make it a big deal they didn’t either.
If YOU are comfortable with it when you tell others, they will be too. If you feel ashamed of it, people will also look at it in a more negative light.
It’s okay to tell people and also okay not to. If you’re not telling people because it’s difficult to explain, look out for a resource coming soon on how to easily explain SD to others!
It’s situational who I tell and who I don’t but overall I think it’s part of my story. Part of who I am (in a good way) and I’m proud of the person I’ve become because of my SD. I now tell my story in a light that I’m proud of the challenge I tackle everyday and believe myself that it makes me strong and then others see it that way too.
There is not a need to make it very serious and have a “sit down” conversation with everyone about it. If you are sick of talking about it or can't get the right words out write a FB post, an email to people, just casually bring it up if the timing feels right in a conversation. Whatever feels natural. There is no "right" way.
If people are interested in learning more make a little email or handout with key points you want them to know. Direct them to the NSDA website at dysphonia.org
If my voice was in a bad place that day and I couldn’t get out what I needed I would tell people in advance. "Hey I have a voice disorder -just so you know if you wonder why my voice sounds like this." This made me more comfortable at the start of the conversation instead of working to hide my disorder or make it sound better. I did not do this as often as I should have in the beginning and wish I had done this before grad school presentations as it would have significantly decreased my anxiety before these!
Those who don’t support you or react negatively-make sure they first truly understand what you're going through. That it impacts you well beyond just a voice change. If you explain this and they still choose to not support you, well maybe you don’t need them in your life! Or perhaps maybe see that they want to be supportive but maybe don't understand it because they have never been in a similar situation or just don't know how to support you.
Tell others how they can help support you on your terms. Educate themselves? Not interrupt? Have a signal for when they should listen to you with patience if you have something to say ?
Those who are true friends will support you regardless even if they cannot ever truly understand all that you go through. They will say something like it doesn’t matter, that’s great that you don’t let it stop you from doing what you want, or ask questions because they genuinely care.
Understand that others’ negative reactions if they have them are likely more about their insecurity or perhaps lack of understanding than about you.
Recognize that others may not know the "right way" for them to react. And recognize that you may perceive their reaction to be negative, even if they're just trying to figure out the proper way to react. If you make them comfortable by saying something like, "It's a big part of my life but I don't let it control my life. I'm happy to answer any questions but just wanted you to know." This opens the door for them to ask questions or to accept this and say thank you and move forward.
Telling others was a huge part in my acceptance journey and what I needed to look at my SD and journey in a positive light. Once others starting accepting it along with me, I was able to move forward instead of staying in the same place stuck with my SD, hiding it.
If you feel strong psychosocial symptoms with your chronic voice disorder see my other blog posts about psychosocial symptoms, my webinar, or setup a free consultation to see how I as a speech language pathologist but as a person who has gone through all of this myself, can possibly help!
If you have struggles I discussed here that you can relate to, comments of what has worked for you, or specific questions I'd love to hear from you. Email me at firstname.lastname@example.org.
#spasmodicdysphonia #chronicvoicedisorder #psychosocial