Tongue-tied – what it is like to experience mutism

I received a lot of positive feedback on my first blog post – thanks to all those that read it and people that have given me feedback. I hope it continues to be something interesting and informative.

I have a couple of ideas of topics to cover in my next few posts and the order is probably going to be quite arbitrary and more to do with if I feel up to being able to write about a particular subject at a time. But the topic I’m going to be writing about here is one that is almost the polar opposite to the subject of my first post – and that is NOT talking.

People who know me well (or even those that don’t know me well at all) know I’m a bit of a conversationalist. I’m easily bored and not a huge fan of my own time and having stimulating conversations and debates with others is really important to me. It’s also kind of necessary to do a lot of talking in my job – especially the teaching and training parts. But what people don’t always know when they first meet me (or indeed if they met me many years ago) is that at times I am entirely unable to speak. It’s not something that I tend to open first encounters with – my mutism usually catches people off guard the first time they experience it.

This is not that I don’t want to speak, that I’m shy or have not got anything to say (I ALWAYS have something to say) or that I am being rude – it is that I am physically unable to undertake the process of speaking. For me it is a physical sensation – literally as if my tongue has been glued to the roof of my mouth. I can be doing something totally alone and not happening to be speaking to anyone and I will suddenly realise that I no longer have the power of speech. 9 times out of 10 it will have been preceded by some sort of factor that creates a lot of anxiety for me – usually but not exclusively to do with PTSD – but it can also occur when I’m overly anxious or overwhelmed generally. Sometimes I can’t quite pinpoint the reason for it but I do know that the more anxiety-provoking situations I am in in a day the higher the likelihood of me losing my voice for a significant amount of time.

I am not CHOOSING not to speak – it’s really important people know that. It’s that I CAN’T speak. But I would really like to…it makes my life easier!

Looking back I think I’ve actually had some sort of mutism forming for years – but was something that used to only occur during periods of dissociation (which I didn’t realise until a couple of years ago was what I was experiencing (and indeed claimed I didn’t dissociate for quite a number of years but it’s kind of hard to avoid now as it does affect me on a daily basis)) but has grown in the past couple of years to something that can sometimes last up to a couple of days. The more complicated and traumatic situations I find myself in and the less empowered I feel over my life the more the mutism grows. I don’t know much about mutism in adults – it’s not all that common compared to in children but it is often linked to trauma unless there is a root in some sort of Autistic spectrum disorder. I suspect it may stem back to my general need to be in control – but it doesn’t really make sense because being mute really does mean you have a lot less control on the things around you!

When I lose my speech I feel embarrassed. I feel frustrated. I feel like people must be judging me and thinking I’m rude or disinterested. I am trapped usually with a lot of stuff I need to talk about but no way of getting it out. Yes, most of the time (though not always) I can type or write – but conversations this way are difficult and often taken wrongly not to mention how long they take! I put a lot of pressure on myself to “just man up and speak” but this only makes the situation worse. Sometimes I can be very distressed and mute and may be struggling cognitively to even process what is going on around me. Or sometimes I can go about my day perfectly normally but silently – when I’m like this I can hold conversations, I can joke and laugh and do team activities, I can travel about…but all in absolute silence. Friends have observed how bizarre it is when I find something funny and collapse into silent giggles but equally how weird it is to see someone crying hysterically but totally silently. (Though on certain levels of PTSD-trigger occasions I do make a noise but it’s more like a roar than any noise a human would normally make).

Not speaking gets in the way of a hell of a lot of life things. I often can’t call for help when I’m distress. I quite regularly have to cancel meetings etc. because there is no point me going. Yes, I can be on the edge of social situations though it’s difficult to really get involved without speaking – a lot of my good friends are very good with trying to include me or being patient waiting for me to type a note on my phone to be read out to the group. It makes it really complicated to get out of stressful situations without being able to properly explain. I also find that depending on the situation, people can treat me very differently to how they would treat me if they met me speaking. I regularly have people thinking I’m deaf and going to Oscar-winning lengths to perform whatever it is that they’re trying to communicate with me – which has given me an insight into how it must be like for someone who is actually deaf. People often treat me like a child – talking in a very patronising way to me (to be fair I do look about 16 on a good day and if you add crying and optional roller skates into the picture that brings it right down to at least 12!) The best scenario is when someone treats me just the same as they would if I was talking – just with a little more patience and time to accommodate for the conversation.

My speech can sometimes be gone for a couple of minutes or sometimes it can be gone for a couple of days. Or sometimes it struggles to return fully throughout a day. When I do start getting my speech back often my first words are more like indistinct noises and I can struggle to speak clearly for quite a while. Thinking and forming words is a really brain-heavy process and it takes some effort I can assure you! I can also sometimes experience my voice starting to disappear- I will still be able to speak and people who don’t know me well probably wouldn’t notice the slight drop in fluency and eloquence but people who know me well will often pick up that I’m not at full capacity.

So if you come across me and I don’t acknowledge you. Or I don’t seem my usual self and don’t contribute to conversation or cancel a meeting or a talk or something – don’t take it personally, it’s not me being lazy, unreliable or unfriendly – my voice might have just gone walkabouts and I’m working my hardest to get it to come back! Treat me like you normally would and just give a little more time.

Sharing the story

So the title of this post is probably a bit misleading – I’m not going to be sharing the whole of my story – for starters you would need 31 years and 51 weeks to understand it fully and I also don’t want to be that person who walks into a party and starts up a conversation going into mega detail about the pain in their leg they’ve been having for a couple of weeks. I’ve had a pain in my head for pretty much a whole lifetime but it’s not the only aspect of me – so this blog will talk about other life experiences as well as those related to my mental health. I am lucky to have had a very varied and wide range of experiences in my life – some hilarious, some traumatic, some close to home, some thousands of miles away- and they all shape who I am today. But I’m more going to be talking about the process behind sharing my story.

I’ve often been told “you should write a book” “you should write a blog” and everything in between. To put it quite bluntly I’m too busy doing life to sit down and write a book but if someone comes up with a technology where you can just scan your memories into a computer and it’ll write a book for you I’d happily comply. But a blog seems a reasonable compromise. And I’m not sure what it’s purpose is but the more I am learning to share my experiences (and it is literally my job now to do so) the more I’m realising that my story is potentially an important one to tell. I come across a lot of people who “don’t expect those sorts of things to happen to someone like you” or who say “I would never have known you go through all that – you look so normal” (if anyone would like to draw me a picture of what “normal” looks like please feel free to send me mail!) I think what they mean is that I don’t shuffle around muttering to myself, I am capable of eloquent conversation (most of the time), I have done a lot of things in my life, I am willing to engage with treatment (that has not always been the case), I do have have job, I do have hobbies and interests and I’m not locked up in a padded cell – on a good day – apart from some visible scarring, I can show no outward signs of mental illness. Yet every minute of every day I’m battling barriers that would make most people curl up in a ball and never leave their beds. “But it’s ok for you – you’re determined and motivated and strong”or “I couldn’t do what you do – I don’t know how you do it” … kind words and I understand the sentiment – but I think sometimes people think I have some superhuman powers of coping that other people don’t have. That, to be totally blunt, totally belittles the effort I have to put in to keep myself going every day. I’m not special at all and I wake up every single morning, slightly dissociated and confused and when I ground myself I want to die. Because that’s how I’ve always known waking up to feel like…wanting to die. Exhaustion at the idea that I’ve got to battle through yet another day. But the difference now compared to a few years ago is that (usually – and this does wibble slightly) within a couple of minutes I remember the novelty that I do have a life, I do have plans, I do have a job to go for, I do have friends and happiness does exist. So I haul myself out of bed and face that day because positive memories can’t be made lying in bed.

It is possible to live with severe mental illness and lead a fulfilling life – yes it might be rather more complicated, frustrating, less in your control and certainly more effort than your average person “doing life stuff”. But it is possible. I have the odd situation of being a service user (and one of those irritating ones that gets labelled as “complex case” (I’ll talk about my feelings about that in another blog) and is quite stuck in the system) and an employee in the same mental health trust. I am also someone who needs to be in a pretty significant level of 24/7 support but I can also hold down a job. My disability doesn’t define my ability and my ability doesn’t define my disability. People get very narrow minded that because I can work and travel across the world and put my pants on the right way round (though FYI last Wednesday this wasn’t the case) that therefore I must be able to cope with everything else and I spent years trying to get services to understand this. I’m all for a positive spin on things but solely concentrating on the fact that I’ve got a really good set of hobbies and friends and totally ignoring the fact that I’m incapable of entering and moving around a building independently or making a hot meal for myself or sometimes getting myself to the corner shop – isn’t going to help me move forwards in life. It has taken me a long time to accept that “both can be true” (a good old’ DBT dialectic) but I still think a lot of professionals have a long way to come to truly understand that this can be the case for a lot of people.

Hence why it’s important to talk. It took me YEARS to learn to talk. Diagnosed in 2005 with an eating disorder I took years to actually admit to anyone there was a problem (despite not doing well at my A- levels, having to take two gap years and being chucked out of uni and a job because of my illness) – I was an expert in denial and “yeah but” was my favourite response to challenges. I think in 2012 I started to realise maybe something was wrong (by this point I was in day treatment for eating disorders but couldn’t shake off the feeling of being a fraud so wouldn’t really open up to anyone) and then after a pretty disastrous 2013 I finally accepted something wasn’t right and would start to open up in private sessions with professionals. At some point at the tail end of 2014 I made a decision to start to stop hiding my mental illness (by this point I had been in day treatment for eating disorders 3 times, was in an acute psychiatric ward and had been hospitalised several times for overdoses). Prior to this I had always covered my tracks with most people except those that really needed to know. I started to let people know and far from being rejected by all and sundry I found that the response was surprisingly positive. I continued to struggle with actually opening up about what was going on for me but I did speak out arbitrarily about mental illness and didn’t hide that I suffered but it wasn’t until I was admitted to a year long specialist admission in York that I actually learnt to talk about what was happening. And that was a huge turning point. It didn’t miraculously make me recover or improve services but it did help me start to unpick and understand what on earth was going on in that grey matter of mine – and although I am still in a very complex point in my life – this ability to speak and articulate more about what is going on is going to eventually get me closer to where I need to be.

I’m also fortunate enough to have a job role where I don’t have to hide my mental illness…in fact so far from the truth because having experience of mental illness is in the job description for my role. And that’s a complicated dynamic – and one that takes practice and I’m still learning to perfect. But how honoured am I to have the opportunity to be in a position where sharing my experiences can genuinely influence others – people recovering themselves, professionals and how they practice, and maybe…just maybe…even have some influence on how services are run. Speaking out is the most important and scary step I’ve ever taken, but it’s worth it – for myself and for other people.