Things I want you to know about selective mutism

1. Finding and using effective means of communication is far more important than being able to mouthspeak.

I can mouthspeak almost all the time nowadays, so much so that my coworkers and casual friends don't have any idea I'm a selective mute. But I still can't tell my doctor all my health concerns or my lover all my sexual worries and needs via mouthspeak--and worse, in high-stress situations like these I can often fumble out some mouthspeak, just not the things I really need to say, maybe even their opposite. That can result in serious emotional and/or physical injury.

The most important thing I've learned this year is that I can reliably communicate via typing in those situations instead. I can't underestimate how important this is. It removed so much very, very real fear from my life, and has made having a non-traumatic relationship possible.

If you or a loved one has recently started losing speech, I don't want you to jump straight to getting it back even if you can. I want you to know how to communicate without it because then you'll be prepared for anything, whether it recurs or not.

2. Ability to speak in a situation isn't all or nothing.

I'm not the only selective mute who sometimes can't speak at all--but has also had other levels, like:

-Inability to speak except to agree with someone else. I've had some really weird phone calls and other conversations with service people who had to guess what I wanted while I ended up agreeing to something completely unrelated because I had no other choice.
-Ability to speak about anything as long as I don't disagree or say something that I fear would displease the other person. This one's really bad in bed.
-Ability to speak and sound normal as long as I don't talk about a certain topic, like sex.
-Ability to speak somewhat but generally just say noncommittal things, like "Maybe," or "I don't know." Also might be able to give a hasty, marginally correct answer like, "Yes" when really it should be a lot more complicated.
-Complete inability to speak unless asked a direct question. I went to elaborate lengths to come out when I was 15 by dressing in such a way that my fellow high schoolers would ask me about my sexual orientation, since I was unable to initiate conversation with them normally.
-Difficulty speaking when asked a direct question that's unclear or makes false assumptions. "Do you want beer or a cocktail?" might provoke silence or a bunch of "Uhhs" if the answer is "I don't drink."

For me this comic was a revelation: Par la Fenetre -- Today's #1 scary thought on anxiety level

It has an anxiety level scale labeled "Inability to speak at all," "Inability to communicate feelings," and "Inability to say 'no'". I think if everyone knew these different levels of mutism were possible and looked for them in critical situations, my life would've gone so much better. As it is, I've spent years building up my ability to communicate that I have these difficulties and work around them (typing--I can't sell it enough).

I think everyone dealing with these levels of partial communication needs to learn to explain them, or just get a card to hand out that explains them. It's part of what we need to keep ourselves safe. Us explaining isn't nearly enough--we need to have people who are actively engaged in working past our communication barriers and looking for warning signs that we might have just agreed to something without meaning it--but it's a huge step forward.