If I were to ask you how you are feeling, or how you have been, niceties and the conventions of small-talk aside, what would your answer be?
I rarely, if ever have an answer, and I will default to telling you that I am fine. Because largely, and often in the moment, I am. I am alexithymic, and without conscious and significant effort, am unable to know, process, or communicate the emotions I am feeling at any given time.
I am often also impaired in my ability to perceive and understand the emotions present in others, which means that my responses are misdirected, misplaced, or lacking entirely.
It is 12pm, and I am (relatively recently) fed and watered. My stomach is bubbling, and I cannot tell why. Am I hungry? Thirsty (still?)? Sad? Anxious? Perhaps I forgot to take one of my medications? Did I have enough to eat for breakfast this morning? Or am I sick?
Because I am unable figure out the answer, I will often run through a checklist of actions– taking pills, eating more, drinking more, reflecting on everything that has happened to me recently in an investigative effort to pin down the cause through a process of elimination. Sometimes I have help, but it doesn’t necessarily make any difference.
I am on the bed in the doctor’s office because my neck has been aching for longer than I can remember. She tells me she is going to press lightly on the area, and that she wants me to tell her if it hurts when she does so. I can feel her pressing, and it feels uncomfortable, so I ask her how much it is supposed to hurt and whether I am supposed to be feeling anything at all.
She is kind and patient, but she repeats, “Tell me if it hurts when I press down on this area.” Confused, I think about how the pain is right down inside my neck. It can come and go, and that unless she presses right down in there, the exercise is pointless, so I tell her everything is fine. I’m not fine, my neck has been aching for longer than I remember and we are no closer to finding out why.
Alexithymia (quite literally ‘without words for emotions’) is a psychological construct present in 10% of the population. It varies in severity among individuals. Alexithymic people have difficulty understanding, processing and verbalising their own feelings and sensations, and recognising or understanding the emotions of others.
A majority of my emotions manifest as intense and often-uncomfortable or painful sensations in my head and torso, and beyond being able to describe them as either good or bad, I do not understand what they mean.
Alexithymia is often co-mborbid with a range of neurodevelopmental and psychiatric disorders including ADHD, autism, clinical depression, OCD, PTSD, and anxiety, and being alexithymic can impair or alter an individual’s response to medications and treatments for a range of related and unrelated medical conditions.
How can you know whether your symptoms are worsening or improving when you don’t know what the sensations you are feeling mean? Similarly, it can be hard– if not impossible– to recognize and interpret the body’s signals for hunger, thirst, elimination, and ill-health. As such, many of us still struggle with nutritional intake and self-care– delaying seeking medical treatment until it is later than is ideal (or not at all).
It is a common misconception that individuals with alexithymia do not feel any emotion at all. I feel so much. Too much, I feel, and have been told so throughout the course of my life. In between feelings and sensations, I am empty in a way that is not apathy (which can also be problematic), but neutrality, and until I was aware of my alexithymia, I thought it meant that I was broken or deficient.
Then would come days where I would feel charged, warm, some might say happy– elated even, and I would worry and sulk through it all as if it might be the last happy day in my life. Of the emotions/feelings I can recognise, there is anxiety (although I can and will confuse this for excitement), rage, overwhelm, apathy, disappointment, guilt, shame, and elation.
I struggle with boredom, anger, love, hate, jealousy, pride, happiness, and ‘feeling okay’. Truly okay. At times it has felt like a prison, but at other times it is freeing.
I have some control over my response to external stimuli, in that playing a song I love repeatedly will evoke the same feeling at the same intensity for really extended periods of time. I am still learning not to overdo it and burn out, because then it is difficult to feel anything at all for a while.
On a physiological level, it is difficult to know what to do with my face, my body, and my voice. Because of alexithymia, I often do not know how to modulate my tone of voice and inflect my spoken words and sentences. We might be talking about something you are excited for, or you might be showing me something you made recently.
I like it, and I am glad you’re happy, but I do not feel it, or anything, and I’m not at all sure what to do with my voice when I am talking to you. Over the years, I have refined the voice and facial expressions I use when I need to give an emotional or supportive response to something, but it is still guesswork.
Immediately, or over time, people pick up on this and respond in a variety of (usually angry or disappointed) ways. Manipulating my responses in these ways takes up a hell of a lot of energy. It gives me tremendous anxiety, because I want to feel with you, I want you to hear me feeling with you, but I can’t.
I wish I lived in a world where I didn’t have to mask or change myself to keep others feeling validated and secure.
In other contexts, I do not know how to plan ahead because I do not know how I am going to be feeling or what I am going to be capable of achieving on any given day. In small ways, this affects my ability to plan and structure to-do lists, stories, and articles; and in large ways, it manifests as a profound inability to agree to plans, make appointments, and set long-term and sustainable goals.
I have ADHD and autism, two neurodevelopmental disorders in constant conflict with one another for my capacity and ability to create and utilise routine and order, with alexithymia hanging out for the ride just to make things that much more difficult.
Being told that I am alexithymic has shifted my understanding of the events of the majority of my life, and for that I feel freed. Not having words for many of my emotions, means that I have had the space to find creative ways to communicate what I am feeling in the form of elaborate metaphors and alternative verbal expressions for my state of being.
Not having feelings in moments in which others might means that I am free to take perspectives that others cannot, because their ability to do so is obscured by what they are feeling in the moment. Mentally, I make a game of likening things to other things, and it feels so, so good when my recipient gets it.
Then, there is the fact that once I’ve gone through the throes of sadness, having come out the other side and, like forgetting how HOT hot is when you are freezing cold, I can no longer remember what it felt like to be sad.
Ultimately, I would wish for there to be greater general awareness towards alexithymia, ADHD, and autism, as I am still buckling under the weight of having been– and the anxiety or likelihood that I will continue to be– misunderstood.
I am grateful for the internet in this and the many support groups I have found– safe havens in which to discuss the things I have not been able to communicate or understand as being things that are not personal failures or inadequacies until now.
I’m fine, though, and it is both terrifying and redeeming that I largely always will be, even when I’m not.