Rollercoaster: My Experience with Alexithymia

The past week has been an absolute rollercoaster of emotions for me. This due to circumstances both expected and unexpected but this doesn’t necessarily make it easier for me to deal with them. I have alexithymia and I don’t understand my emotions very well.

The word ‘alexithymia’ stems from three Greek root words. The first root is the prefix ‘a’, which means ‘no’, ‘not’ or ‘without’. This is followed by ‘léxis’, a word meaning ‘speech’ or ‘language’. Finally, it ends with “thymia” –  a word used in the formation of names, specifically when talking about mental health disorders, concerning emotions. Etymologically, it means something close to “no words for mood”, which is close to the actual definition – “difficulty in experiencing, expressing, and describing emotional responses.”

Alexithymia is different for every person who has it: some people cannot understand any emotions at all, while others can’t express or understand them well enough when compared to a typical standard. The exact statistics vary from study to study, but there is a confirmed link between autism and alexithymia. People can have alexithymia without being autistic and can be autistic without experiencing alexithymia, but a lot of autistic people do. This seems to be where the cold and inexpressive stereotype of autistic people comes from. However, it’s inaccurate in a variety of ways, mainly because autistic people do feel things but the difficulty in experiencing, expressing and describing these feelings leads to inaccurate perception of something internal from neurotypical people. Simply, the feeling are there, but the response is different to what neurotypical people might expect.

Alexithymia, for me, means that I can easily identify strong emotions, like anger and excitement, but others are harder. I understand the divide between being happy and sad, but the grey area inbetween is really confusing for me. Growing up, I learnt words like ‘stressed’ and ‘worried’ but I never fully understood them in a way that could make them applicable to me, personally. I used them when it seemed applicable, namely in situations where I’d heard other people use them. This doesn’t mean I identified such emotions, it was more of a stab in the dark and hoping for the best. Dictating emotions is something that general society seems to believe is a simple task but for me, it’s like speaking a language I don’t understand. I’ve heard someone else use it, so I will, but I doesn’t mean I believe nor fully grasp the words I’m speaking.

Knowing about alexithymia means I’m far more likely to be honest about what I’m feeling these days. Having a name for not having the words to discuss emotions means I can discuss them in a way I’ve never been able to. It seems like an oxymoron, but stick with me. If my mum asks me “How are you feeling?”, I realise it’s an option to respond with “I don’t know.” Instead of using specific words, we’ll look at the scenario together and assess it carefully. This means I’m not using words that don’t work with how I’m experiencing things and my mum can help me understand things. It’s not me suddenly understanding what specific emotive words mean, but understanding my mind and using that to my advantage, an advantage other people have in identifying their emotions.

Like I said at the beginning of this post, there’s been a lot happening recently, which means I’ve spent a lot of time in the grey area of emotional confusion. Significantly, I’ve left school, which meant I said goodbye to people who’ve supported me for over a year and helped me grow as a person, and just a day later, my sister got ill and she’s not been herself. I can’t talk for every autistic person, by any means, but I feel at least part of my issue surrounding change is the emotions it provokes. I don’t know how change ends up making me feel thus I begin to struggle with understand my own mind more than usual. Differing from what seems normal – to me – confuses the ‘balance’ of my mind. I can’t realistically control my thoughts in the way I want to because emotions that I fail to fully understand get in the way.

Another problem I have with emotions is that they heavily depend on the situation. What is classed as a ‘sad’ response, can appear in different ways and be a response to different situations. It’s difficult for me to recognise and coherently comprehend that two events could have occurred, one made me cry and the other I didn’t, but they can both be classified as things that have made me ‘sad’.

In reality, putting names to feelings can be useful but I don’t think they should be heavily depended upon in general. I started a course of Cognitive Behavioural Therapy, or CBT, last year to help alleviate anxiety. It seems to be the most common form of therapy for anxiety and depression so I was hopeful that it would work out. Unfortunately, it just didn’t work for me because of the core principles. It is based upon the idea of the link between thoughts, emotions and behaviours – without a full understanding of emotions, I couldn’t work with the therapy, so it couldn’t work for me.

This is a shorter post that normal, but I hope it’s given an insight to what alexithymia is and how it impacts me.

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