Q&A: What's "Alexithymia"?
How to listen to your body and why it's important
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Here's another excellent question from a reader about Burnout and alexithymia. Amelia's answering this one!
Q: I listened to episode 58. [ #58 of the FSP2020 podcast -ed.] Then my girlfriend took the Alexithymia questionnaire. She scored a 157! And she has psoriatic arthritis! Are there psychotherapists who specialize in Alexithymia? Do you recommend that? Are there modalities of psychotherapy which have been shown to be more effective with people with this condition? Thank you. This is a very important realization for her/us.
A: Learning about alexithymia was transformative for me, too! It’s the clinical inability to feel, name, and recognize feelings. About 10% of the population have it, so the odds are some readers might have it and not know it, so let’s talk about it. Also, women are frequently trained to listen to others about what our bodies need rather than trusting what our bodies tell us, so even those of us without a clinical disability will benefit from learning more about the effects of ignoring our bodies.
What is alexithymia?
For those who haven’t heard episode 58 of The Feminist Survival Project, I have a condition called alexithymia (pronounced uh lex ih THIGH mee uh or [ə lɛks ɪ 'θa:ɪ mi ə]. It’s a Greek word that means “no words for feelings,” which is not an accurate way to describe what it’s like to have alexithymia.
For me, it’s simply harder than most people to notice and identify my own internal experience. Am I hungry? Do I have to pee? Unless the feeling is urgent or extreme, I don’t know until I turn my attention to my body and find out.
If I hurt myself, I know right away. But if it’s something mild like my shoe rubbing uncomfortably, I’ll just be in a bad mood and not know why until it turns into a blister and becomes the kind of acute pain that makes me notice. It makes me awesome at ignoring my feelings until there’s a crisis. Which is why I’ve been to the hospital three times and had two organs removed due to extreme inflammation.
I also don’t express my feelings the way other people do. I once went to urgent care with a badly burned hand that hurt like hell, and said to the doctor, “I’m here because I burned my hand.” When the doctor unwrapped it, he did a double take and said, surprised, “this is a second degree burn!” He was surprised because he didn’t see me doing the things that most people do when they have a second degree burn on their hand. Writhing? Crying? I don’t know. Anyway, I said, “I know. It hurts like hell.” Not because I was trying to be calm, just because I don’t express my discomfort the way most folks do. It makes me a champ at sitting still through a tattoo, though.
And, lastly, I don’t notice the feelings of others accurately or instinctively. I can do it if I try, and my training as a teacher and conductor has taught me to notice the feelings I need to know about in my students and ensemble members. But in casual conversation, it’s a huge challenge.
Emily is the complete opposite of me. She notices all the feelings, and must fix the problems now. And caring for yourself before problems become extreme is a great way to avoid the emergency room.
You might have a genetic predisposition to alexithymia, but as far as we know so far, it’s largely learned in early childhood. It’s more common in men than women, perhaps because many boys are taught that feelings are shameful. So, in order to fulfill the expectations of their caregivers, they learn not to express their feelings as much as girls are allowed to. Alexithymia is also much more common in people with autism, (about 1.5% of the population).
Are there evidence based treatments for alexithymia, or experts who can help?
I had your same question – what’s the state of evidence based therapies for alexithymia? I went down the research rabbit hole.
I read peer reviewed papers and statistical studies.
I watched youtube videos of mental health professionals.
I talked to my own medical care providers.
Nobody knows anything about alexithymia.
As a matter of fact, Emily, who learned about alexithymia in her graduate program, was surprised when I was diagnosed with it, because her understanding of my experience did not fit with the clinical information she had learned.
The peer reviewed research couldn’t even agree on a definition of what “feeling” is. Most people wanted to distinguish between somatic/bodily feeling and emotional feeling. In fact, the research agrees most on the idea that people with alexithymia “can’t distinguish between emotional and physical feeling.” Somehow these researchers haven’t heard what emotion researchers have been saying for decades: that emotions happen in your body, that emotions are perceived in the body, and that emotional and somatic feeling have 100% overlap? So, all the research into alexithymia is trashy garbage that smells like poop. 💩
The videos I watched of mental health professionals talking about alexithymia were either recitations of the poop research, or mid to late career therapists and psychiatrists who were just discovering that alexithymia was a thing! They spoke with insultingly shocked and baffled tones about the weirdos that, like, don’t know what they feel?!!?!?!?!!
When I spoke to my own medical care providers, I mentioned that I have it, and they didn’t know what it was. To their credit, they obviously looked it up between meetings with me. In particular, my physical therapists started telling me “you seem tired” instead of asking if I was tired. They were definitely more reliable than I was when I came to observing how I felt!
So, no, there aren’t evidence-based therapeutic modalities to help people with alexithymia. There can’t be yet, because researchers don’t even know what alexithymia is.
Is there any hope at all?
Yes, there is hope! There are lots of autistic youtubers who have made videos about their personal experiences with alexithymia. Of course experiences all vary, but hearing the real life stories of those with alexithymia is very reassuring.
And it’s absolutely possible to learn to notice your internal experience, and get better at noticing and naming feelings. I know because I did it.
As I always told my choirs, practice makes better.
My childhood dance classes, voice lessons, conducting training, year of Alexander Technique lessons, and decade of tai chi practice have all helped improve my ability to notice my internal experience. The final series of Feminist Survival Project goes through a scaffolded series of exercises to help folks learn to listen to our bodies.
How to Listen to Your Body, Part One
How to Listen to Your Body, Part Two
How to Listen to Your Body, Part Three
The short version of How to Listen to Your Body is: decide to notice sensory input.
What sounds do you hear, what tastes are you experiencing, what smells, etc.?
Take time to notice and name them.
Use the same approach to noticing and naming internal experiences – feeling your heartbeat, breathing, pain or pleasure?
Spend time intentionally noticing and naming without judgement.
Then do it some more. A few minutes every day. For a few months.
Finally, reflect on whether your capacity to notice has improved since you started practicing.
There's still so much to learn about alexithymia, but in the meantime a little practice may help you a lot!
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