Alexithymia. Ever heard of it? Me neither. It sounds like one of those words you’d get in a national spelling bee when they’re trying to off you. Fortunately it has a rather pedestrian etymology: ‘a’ meaning ‘without’; ‘lexis’ –speech, or words; and ‘thymos’ – soul, or emotions. In other words: no words for feelings. Hmm… Who would have thought it was a condition? Mind you, since there’s one called anhedonia, the gloves are off.
I’m fairly certain that its shadow would never have darkened my office door, had not a patient pulled it deliberately from her purse while reaching for her phone. Pandora comes immediately to mind, but this lady’s name was Alexis – or, rather, Alexisse as she quickly corrected me- with the accent on the last syllable would you believe? She seemed innocent enough sitting in the waiting room, but in retrospect, she was more a pier in the currents of a hectic room than a middle aged lady. The usual waves of noise and confusion seemed to break over and around her with as little effect as a storm on a breakwater. Throughout the maelstrom, she maintained a smile on her face, but she later admitted to me that it was a well-practiced artifice –a mask that she would always carry with her to help her to blend in.
Her clothes certainly helped as well –a grey skirt worn just below the knees, white blouse buttoned tight around her neck, but loose at the wrist, and black shoes with just a hint of a raised heel. Her light brown hair was short and tidy and her nails long and uncoloured. An average height, she would have melted into any crowd without a trace. Indeed, she followed behind me to my office like a shadow.
I’m describing her like this in the full light of retrospect, however. We always tend to remember things in ways that make sense to us I suspect, although at the time, only the word stood out. She presented as a model patient, and was not at all upset that I was running behind time and was almost an hour late before I was able to see her. “These things happen,” she said with the same smile she’d worn through the whirlwind out front. “I carried a book with me, just in case.”
I brought up her file on the computer as she sat contentedly across the desk inspecting the art work on the walls. I’d not seen her before, but the only thing the family doctor had sent me was the result of a pap smear she’d done recently. Alexisse was a new patient for her as well, and apparently had not had a pap done for over ten years. But worse, the smear was read as showing some malignant cells.
“Did you find the pap smear results?” she suddenly asked, the smile still on her face.
I nodded and looked at her for a moment before speaking. She didn’t seem at all upset so I assumed her GP hadn’t discussed the results with her. Of course the diagnosis was unlikely to be firm until a biopsy of her cervix had been done, so perhaps she had decided to wait until I did that before discussing it with Alexisse.
“Dr. Mandel said you’d be able to confirm the diagnosis with a biopsy.”
The smile never left her face but I was drawn instead to her eyes –they were totally neutral. Cool, if anything. “What did Dr. Mandel say about the pap smear?”
Alexisse shrugged. “Well, for a start, she tried to downplay everything. She said that pap smears are only screening tests and so sometimes they are mistaken…” She stopped for a moment and stared at me with an unchanged expression. “But even when somebody goes to great lengths to paint a black paper white, you know it still ends up looking grey.” Her eyes sought mine to see if I understood.
I approached the topic carefully. “So… What do you think she was trying to tell you?”
Another shrug. “That I have cancer of the cervix.” She said it as if I had asked her about her last period.
I was speechless for a moment. There was no sign that she was upset. No tears. No tightening of her facial muscles. Just the smile –the mask. “You don’t seem very upset. Your family doctor must have done a good job of discussing it with you.”
Alexisse shook her head. “She seemed a little confused about what to say. She asked me if I had any questions, and when I didn’t, said she’d send me to see you.” She stared at me for a while and when she saw that I looked puzzled as well, sat back in her chair.
“I have alexithymia,” she said as she reached nonchalantly into her purse to turn off a phone that was ringing. I must have cocked my head, because her expression intensified. “It’s a condition that makes it difficult to feel emotions –even identify them as such. I’ve learned to put a smile on my face along with my makeup in the morning.”
I started to ask if it was a type of autism, but she saw the word forming in my mouth and waved it away. “Only half of us with the condition are autistic, if that’s what you’re going to ask…” She took a deep breath and let it out slowly. “I’m sure it’s a spectrum disorder –worse in some, less in others.” The smile appeared again. “And the next question you’re going to ask is about my name. Isn’t it a little suspicious that my name is almost the same as the condition? I mean I can almost see everybody thinking it. Go online and you’ll see the community calls its members ‘Alexes’. It’s why I’ve started pronouncing my first name differently…” She sighed briefly. “I don’t think the condition is even accepted by mainstream psychiatrists yet. It wasn’t in the DSM IV at any rate… But I have to admit I haven’t looked lately.”
She crossed her arms and stared out the window. “I’ve always wondered about why everybody except me seemed to get excited about things. I can’t remember ever being angry, or crying at a movie. People thought I was weird.” She shifted her position on the chair. “Anyway, I looked up the etymology of Alexis –which is how my parents spelled the name- and realized it came from the Greek for ‘without speech’. It didn’t take Dr. Google very long after that to introduce me to alexithymia.
“And no, I haven’t had a formal diagnosis. Dr. Mandel asked me about that.”
I sat back slightly on my chair to get the computer screen out of the way. “Well, frankly I’m more concerned with doing a biopsy as soon as possible than with any personality disorder you might have…” I wanted her to know that the most important thing to think about at that moment was her health. I meant well, but her facial expression changed immediately. She looked almost angry –hurt, at the very least.
“Personality disorder? And that I might have?” Her whole body tensed at the perceived insult. “I think you’re being entirely too insensitive, doctor!” She shook her head slowly. “Just like my family doctor. Now you see why I don’t go to doctors very often.” She started to get up from her seat. “Your secretary can let me know when you’re going to do the biopsy,” she said, still shaking her head in disbelief. “You all seem to ignore who I am for what I have…” She fixed me with a glare that almost pinned me to my seat then left the room with a toss of her head… Anger?
She never showed up for any of the biopsy appointments despite multiple phone calls from both our office and her family doctor’s. I can only hope she sought help from someone who listened to her pleas for understanding. I don’t know whether she actually had alexithymia or some other mental issue such as schizophrenia, but it clearly seemed to interfere with her ability to process information appropriately. I’ve since learned that alexithymia is often associated with other psychiatric disorders, so perhaps she had decided to fixate on a more acceptable but obscure variation. Maybe she’d been wearing another mask -one that even she had not suspected. Or one that she found too difficult to acknowledge…
I also Googled the word and discovered that the BBC had an article on it that was dated a month or so prior to her visit: http://www.bbc.com/future/story/20150818-what-is-it-like-to-have-never-felt-an-emotion I remain open to convincing, but I keep remembering what Iago said in Shakespeare’s Othello: ‘I will wear my heart upon my sleeve for daws to peck at. I am not what I am.’