If You’re Happy and You Don’t Know It: The Silent Struggles of Alexithymia

As a kid, I paid about as much attention to my emotions as I did to the surrounding air pressure. I noticed any drastic changes by detecting their effects (my ears popping as a plane took off or nervous sweat beading on my palms), but for the most part, I didn’t devote much attention to either one.

It was easy to navigate life without my eyes always glued to a barometer, but my lack of emotional awareness posed a greater challenge. As far as I was concerned, I could feel a little or a lot, and I could feel good or bad. Thus, I experienced a whopping total of four emotions. “A little” plus “good” was the easiest to manage, requiring no extra effort. “A little” plus “bad” proved slightly peskier, but for the most part, the combination would pass on its own. “A lot” plus “good” produced intense, sometimes overwhelming exuberance, which I learned to tame with physical exhaustion. And then there was the dreaded “a lot” plus “bad,” which I had no idea what to do with. Thankfully, that one didn’t come up too often – at least, it hadn’t yet.

Throughout elementary school, my vocabulary broadened, but in the realm of emotion, words continued to fail me. Feelings were – to use some of my preferred terms – abstract, unfathomable, and intolerable. When I felt the “a lot bad” coming on, I preferred to ignore it as much as possible, and when this proved unsuccessful, I flooded myself with sensory stimuli to overpower all other sensations. I’d end up running barefoot in pouring rain until I was soaked and freezing and breathless, my thoughts dissolving beneath a barrage of precipitation. During the dry months, I scratched my lips till they bled, swallowed spoonfuls of unsweetened cocoa powder, gnawed on cinnamon sticks, and inked swirls of black and gold on my palms and wrists. It was the act of writing, not the marks themselves, that made a difference. The steady, firm pressure of a ballpoint pen tracing my forearm calmed me, made me still.

These strategies worked until they didn’t. I was twelve when the second bout of severe depression settled in, though I didn’t know what it was at the time. “Bad.” “Wrong.” These were the only words that came to mind. Even terms as simple as “sadness” didn’t seem quite right. The dictionary informed me that sadness was “the quality of being sad,” and that “sad” was the opposite of “happy.” But what did any of it have to do with the hardened glue in my veins and the abstract pain writhing under my skin and the excruciating insult of a sunny sky that seemed only to mock my misery?

I could think of a thousand words to explain my circumstance, but they added up to nothing. It was like trying to assemble a 1,500-piece Lego kit without the instruction manual. The harder I tried, the less sense it made, so whenever someone asked me what was wrong, I answered, “I don’t know,” and I was telling the truth.

In therapy, my frustration only mounted. Clinicians were oh so fascinated by these all-important feelings of mine, feelings that I did not believe myself to possess. Rate your anxiety on a scale of 1 to 10, they told me, and I volleyed arbitrary integers back. The interrogation continued. Was I scared? Despondent? Hopeless? Lonely? Perhaps I was guilty. Or nervous?

No. I was dizzy and tired, full of glue and intractable pain. That didn’t fit on their scales, though.

In high school, I wrote novels, studied magical realism, cared for crayfish, and wrote a code in my computer science class that would do my trig homework for me. I also missed months of school, tried dozens of medications, saw doctor after doctor, and accumulated an ever-shifting array of labels that never quite managed to capture my constellation of symptoms. It took more years, therapists, and hospitals than I care to count to arrive at a diagnosis of autism.

I still see this development as nothing short of a miracle. While I find the puzzle piece symbol visually unappealing, it does represent the function my autism diagnosis filled. The last piece in the puzzle of Lucy fell into place. The doctors figured out how to help me, and I figured out how to help myself. In the process, I stumbled upon the term “alexithymia” and its accompanying paradox. I finally had the word to explain my lack of words.

“Alexithymia” comes from the Greek, an elegant tangle of affixes. A for “without,” lex for “words,” thymia for “feelings.” Without words for feelings. The term was coined by psychiatrist Peter Sifneos (who, to my amusement, also came from Greece) in the 1970s, describing a group of patients who struggled to distinguish between physical sensation and emotional arousal. In the decades since, alexithymia had gone from a brand-new coinage to an established construct observed in 10% of the normal population and 50% of autistics. Alexithymic overlap with numerous autistic traits, including emotional dysregulation, facial recognition difficulties, anxiety, mood disorders, and more. 

The directions of causation, though, have yet to be determined, as evidenced by the dizzying array of scientific articles with titles like “Expression Recognition Difficulty Is Associated with Social but Not Attention-to-Detail Autistic Traits and Reflects Both Alexithymia and Perceptual Difficulty” and “Impairments in cognitive empathy and alexithymia occur independently of executive functioning in college students with autism.”

However my cognitive empathy and attention to detail might be linked, I understand that although alexithymia can’t be “cured” or “fixed,” I have strategies to work around it. Because I don’t process emotions intuitively, I learn to do so mechanically. It took months of intensive therapy for me to master the basics. Anger is hot and writhing, a reaction to something gone wrong. At best, anxiety simmers; at worst, it suffocates. I take deep breaths and Klonopin to keep it below boiling point. Sadness makes everything slow and heavy. The more you resist it, the deeper it burrows. Instead, I listen to indie rock, stare into giant mugs of black coffee, wait for the feeling to pass. Joy quickens matter and illuminates surfaces. So does fear, but the light there is sharper, more startling.

As I slowly grow comfortable in the world of myself, physical sensations are slightly less of a mystery. I slowly grow comfortable in the world of myself, and I put this knowledge to use. I observe my aching neck, fluttering stomach, clenched jaw, and quickened heartbeat, then vaguely wonder if they might be related. I consider the idiom “butterflies in my stomach” and realize that it describes nervousness. I think back to what my dentist told me before I started college: “I’d like to get you a night guard. Some kids start grinding their teeth from the stress.” I google “why does my neck hurt” and discover that stress is a potential answer (along with bone spurs, meningitis, osteoporosis, infections, tumors, and demonic position).

I open a new tab. Does my neck hurt because I am anxious? Google says yes. Mission accomplished.

It took four hours to notice any of the physical signs, then an elaborate thought process and several consultations with WebMD to trace their root. I still haven’t figured out why I’m anxious, let alone what to do about it, but I remind myself that four years ago, I never would have thought to ask. Instead, I would have been running in the rain, swallowing spoonfuls of cocoa powder, my efforts to remain calm only catapulting me further into chaos.

What is it that I feel when I consider all of this? Content, satisfied, proud?

At my baseline state, I’m still as aware of my emotions as I am of the air pressure, but at least I have a barometer.

Photo by Moritz Knöringer on Unsplash



Categories: Autism, etc., Blog

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