Milo’s story: Living with selective mutism
Milo, one of our student volunteers, encourages people to learn more about selective mutism and how it can impact on day-to-day life.
Milo, one of our student volunteers, talks about their experience of selective mutism and encourages others learn more about it. Selective mutism, sometimes referred to as elective mutism, is a severe anxiety disorder where a person is physically unable to speak in certain situations.
“From a personal point of view, selective mutism feels like I am being strangled from the inside out. It feels like someone is trying to pull the tightest knot right in the middle of my throat. Whilst all of that is happening, there are a million words of what I want to say racing through my head in a matter of split seconds.
During this, I feel a massive wave of humiliation washing over me. Sometimes, after all that, all that would come out from my wavering mouth would be a small squeak, or maybe nothing at all, leading to a sigh.
Of course, this is just my description of what it feels like to me, there are tons of other ways people describe the feeling.
“One of the most upsetting parts for me is when I really want to be able to stand up and speak in front of the class and do a really good presentation in front of them, but there is always the anxiety of the possibility of my selective mutism taking over and humiliating me in front of everyone.”
Another thing I have to deal with is the remarks that people make, most of them being: ‘shy’ or ‘quiet’ or ‘they don’t speak’. In particular, the comment that angers me most is the ‘they don’t speak’. I guess this is because that is not true at all and whoever makes the remark always says it as if I’m not in the same room as them – even when sometimes I’m right next to them. Most of the comments I can easily ignore because I just eventually learnt just to smile my way through it, or to pretend I didn’t hear the comment.
From 2018-2021 I had the opportunity to work alongside an author who wished to write a children’s book on Selective Mutism. This was an extremely empowering experience that I am so grateful to have been a part of.
The book is called ‘Call Me Lion’ by Camilla Chester and was published in June this year. Camilla wanted to involve people with personal experiences of selective mutism in order to write an accurate portrayal of the protagonist, Lion, who embarks on a journey with selective mutism. I think it’s very important to see yourself being represented in books and the media so this was a wonderful opportunity to be included in. Camilla has documented her journey with her book and tour which can be found on her blog.
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