Written by Emma Chisit
CW: Trauma, depression
I hadn’t heard of it but it sounded like a portmanteau of “anorexia”, “dyslexia” and “dysthymia” and would surely herald a night ahead of furious Googling.
I was at the neuropsychologist to get the results of my testing – ten hours of brain prodding designed to solve the mystery of me – why I am a patchwork of personality quirks and physical peculiarities, and whether it is all good and well to continue living this way.
The neurologist had requested the testing when an MRI had offered no reasons for my somatic anomalies: why my body is so numb he can push a needle into my back, why I don’t dream and why my heart rate variability scores reveal I am in a state of constant stress – but by my self-reports, I’m not stressed or depressed, just concerned as to why when I pinch myself hard, it doesn’t hurt as it used to.
The neuropsych testing was only meant to have taken six hours but later that day she called me and asked me to return for four more hours at her clinic’s expense.
“I have never come across anyone quite like you,” she said. I took that as a compliment. And now here she was giving me another buzzword to add to my tongue twister of conditions: temporal lobe epilepsy, hypermobility, autoimmune disorder and prosopagnosia.
A Wikipedia check told me that alexithymia literally translates to a (lack) lexis (words) thymus (emotions), or “no words for emotions”, and is a personality trait characterised by the inability to identify and describe feelings, and in distinguishing feelings from the body’s physical signs of emotional arousal. A person’s alexithymia score can be measured with questionnaires such as the Toronto Alexithymia Scale. Like many of my other diagnoses, alexithymia is more prevalent amongst the Autistic population. In one recent study, Autistics reported significantly higher alexithymia scores than the control group, with 47.3% of Autistic females and 21% of Autistic males meeting the defining score for clinically relevant alexithymia.
But this didn’t sound at all like me! If anything, like many Autistics, I felt too much. Growing up I was frequently told I was “too sensitive”. Aged eight, I was sponsoring a World Vision child with my pocket money, unable to bear the crushing distress that haunted me after seeing their ads on TV.
It can also be an adaptive response to trauma, known as state alexithymia rather than trait alexithymia, where you start to express psychological distress in bodily rather than emotional form – and in that moment it all made sense.
In my latter childhood years I survived four years of mind-changing trauma that I don’t think I’d survive again if I tried to unpack it. There can be more to lose than there is to gain by “opening the barn door”, as my doctor described it. So, I don’t. It just sits there, silently, like a black box recording of unanswered “Maydays” that I will never try to retrieve.
As Josh Jameson once wrote, “There comes a time when you have to choose between turning the page and closing the book.” Unable to face turning another page, my mind severed my emotions to preserve my sense of intactness. I closed the book. I had felt more than I could bear, so I chose to feel nothing at all and moved my emotions into permanent protection.
The tragedy of subconsciously doing this was that in order to escape the fear, I shut down the brain areas that are responsible for registering the entire spectrum of human emotions that form the foundation of our sense of self – all the joyous sensations too: intimacy, silliness, pride, nostalgia, wonder …
But emotions – consciously felt or actively suppressed – must be processed somehow and if they’re not expressed viscerally, they present physically. The somatic symptoms I experience are bodily manifestations of my feelings. I am still hyper-empathetic and am the first to be sobbing at a sad news story, but the emotional pain does not register. It is a bit like having a caesarian instead of a natural birth. Physically, I feel the tugging and understand the significance of the event, but I am numb to any pain.
So if I want to know how I feel, I have to focus on my physical sensations. If I have tinnitis and insomnia, I am most likely depressed. If I need to madly Marie-Kondo my house, sit cross-legged on the floor or spontaneously floss dance (which is really just a trendy, socially acceptable stim), I am more stressed than normal. If I have ideas firing thick and fast, I am in a good headspace. If I tell my husband about the same idea many times, it is something that I must be really excited about.
Which brings me to the dysfunction alexithymia can cause to interpersonal relations. Having poorly differentiated emotions has a trickle-down effect, impacting relationships. There are many online non-alexithymics complaining that their alexithymic partner is “inhumane” because they’re unempathetic and “Empathy is what makes us human!” they say.
And, yes, you can be alexithymic and be heartless.
You can be alexithymic and be an uncaring parent.
You can be alexithymic and not meet your partner’s emotional needs.
But you can be alexithymic and be passionate.
You can be alexithymic and be resilient and resourceful.
You can be alexithymic and be a caring mother.
You can be alexithymic and be the perfect soulmate.
My husband has had lifelong difficulties identifying emotions and we live in mutual, emotionally uncomplicated bliss (most of the time. We are, after all, only human, not withstanding our alexithymia.)
Most importantly, you can be alexithymic and be empathic.
Alexithymic empathy is there – it just looks different. I am a corporeal and solutions-oriented empath.
When I comfort my injured daughter, I physically console her whilst offering solutions. I give her a big bear hug, lots of kisses, rock her and offer her a bandaid. When I am passionate about a cause, I will donate and advocate for it rather than bemoan the injustice of it. Contrary to the stigma, we are no less caring souls.
We share workarounds. One recent shortcut shared in our online community was that when your partner comes to you in distress, by asking explicitly, “Do you need me to give you comfort or solutions?” you can meet your partner’s needs. Alexithymics can be innovators.
We make great paramedics and rescue officers. When snap decisions need to be made with emotional pragmatism, you want an alexithymic in charge. We may, in our neurodivergence, have paid what some may see as the ultimate price of life, but we chose to live. Alexithymics are survivors.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.