How Do I Feel Now? Living with Alexithymia

Last week in Exploring Alexithymia and Emotional Blindness I described how hard I find it to communicate my emotions, and that there’s a word for that — alexithymia. I’ve looked further into the topic since then and thought it would be useful to share what I’ve learned. If you struggle to express how you feel, this is for you.

What Is Alexithymia?

Also called emotional blindness, Alexithymia (literally “no words for emotions”) is a personality trait where you have difficulty experiencing, identifying, and expressing how you feel. It’s estimated that one person in ten has alexithymia. The proportion is higher in people with certain mental and neurodevelopmental conditions. Given that I only learned the word existed a few weeks ago, it may seem premature to claim it applies to me. That said, I recognise many of its traits and score highly on alexithymia self-assessments. More on those later. The following description by UK charity Autistica resonates strongly with me.

People who have alexithymia may have have trouble identifying, understanding and describing emotions. They may also struggle to show or feel emotions that are seen as socially appropriate, such as happiness on a joyous occasion.

The inability to “feel along” with the crowd is something I’ve been aware of all my life. Whether it’s societal grief at the death of a famous actor, artist, or musician, or the collective fervour that follows the performance of local or national sports teams, communal emotion leaves me cold. I’m unable to partake or even understand why I’d want to. I’m amused, rather than confused or upset, but the failure to engage in such shared experience is undeniably isolating. The death in 2023 of Sean MacGowan was a notable exception. The outpouring of grief at his death moved and intrigued me, leading me to explore his life and legacy in The Last of the Irish Rover.

How Are You?

Fran hates to be asked how she is, but I don’t mind the question. In fact, I’m happy when someone close to me asks how I’m doing, not least because what’s going on in my life is usually far less problematic, stressful, or intense than what’s happening in theirs. That said, I’m more likely to respond with what’s happening to me rather than how I’m feeling. My situation, rather than my emotions. The latter might get a one word high-level label. Good. Chill. Tired. It’s no surprise that friends rarely enquire explicitly about my feelings. They understand I find it hard to answer with clarity or precision.

How Sad the Song?

Alexithymia isn’t a lack of emotions. It’s finding it difficult to put those emotions into words. I was eighteen when my father died. We’d been close, yet the best words I could find at the time were “How sad the song.” Did I feel sad? I felt something, but I’d struggle as much to name those feelings now as I did then. Relief was there, after his long illness. Uncertainty, too, at what his death meant for the family. But there were no tears. My mother died in 2018. The evening after her funeral, I found myself alone by the shore. It was many years since I’d written any poetry, but a handful of lines came to me and I jotted them down as I walked.

Wandering
Wondering

How do I feel
What do I feel

Release
Relief

Re birth

Stillness
Silence

Un known
Un homed

Un tethered

Still
Calm

Centred (thank you

— Liverpool, March 26, 2018

The lack of question marks in the lines “How do I feel | What do I feel” is noteworthy. Despite pondering my emotions, it’s as though I daren’t ask myself outright. What was I afraid of? (Was I afraid?) The answers? Or the shame of knowing there were none I could voice. The lines that follow these un-questions — release, relief, and so on — aren’t answers. Not really. They’re not what I was feeling. They’re more like signs along the path I was walking that evening. Each suggested something I might be feeling, but none was sufficiently accurate. Only at the end, as I headed back to the hotel, did I find something I could attach a label to. How did I feel? Still. Calm. Centred. The gratitude was real.

I’ve attempted to write about bereavement and loss before, only to run aground. The new perspective of alexithymia may allow me to pick up where I left off. Because while I didn’t experience strong emotions at the death of my parents, I have felt and do feel deeply at other times. The following is from my draft notes on the subject.

My parents’ deaths scarcely touched me, emotionally. My friend’s death [in 2005] did, but much less than I suspect I was supposed to feel. Yet a shift in one friendship maybe ten years ago brought me to my knees, and to floods of tears. Break-ups with friends, permanent or not, have devastated me for weeks, even months, yet death leaves me relatively unmoved. Why? What’s going on?

I identified two possible explanations.

The key for me is abandonment. I didn’t feel abandoned by either of my parents. My father’s was too early [I was eighteen years old] but not entirely unheralded. My mother’s was much later and long-anticipated.

And again:

The loss of a relationship, a friendship, can be harder because no matter how unlikely or unhealthy it might be, there is always the possibility of reconnection. Of recovery. Of a second (or third, or fourth) chance. Death is different.

That might seem the wrong way round. Surely, death should be more impactful, precisely because it’s final, with no opportunity to reconnect. I can only say that it doesn’t feel that way for me. It’s not only loss that I feel intensely. Jealous, angry, sad, empty, lost — I’ve known these and more. Joy too, delight, pride in myself and others, passion, love, exhilaration. But life can’t be lived in extremes all the time. What do I feel more generally? This is where I have the most trouble putting things into words. This is partly because my most commonly experienced mood is characterised by the absence of any identifiable emotion. I’ve explored this previously in Flatness and Disinclination, a post which began life as an audio recoding.

I wanted to see if I could capture a little of how I’ve been feeling since some time yesterday. It’s what I tend to call “flat.” That’s verbal shorthand for a sense of feeling fairly low. Not actively low or depressed; it’s more like the absence of any specific emotion than the presence of a negative one, if that makes sense.

It’s one of the few times I’ve spoken openly about my feelings.

The Physicality of Emotions

Something I find hard to wrap my head around is how physically other people seem to experience their emotions. The following passage at The Village Counsellor expresses this perfectly.

Feelings are fundamentally physical experiences: things happening in our bodies, in response to things happening in our environment. That claim might come as a bit of a surprise to some people, as it once did to me, because the culture I grew up in (white working class Britain in the 70s) gave me to understand that feelings were a lot less concrete, more ambiguous, than that. I’d go so far as to say they were less real than that: they were an entirely subjective, interior experience, with no real-world, observable existence.

When I read those words for the first time, especially the first sentence, my instinctive reaction was “What?? Really?? No way! Emotions aren’t like that!” At least, with rare extreme exceptions, they aren’t like that for me. Perhaps this goes some way to explaining why I find it hard to express my feelings in words. If they had more of a physical component, would they be easier to label, to describe to someone else? The cultural explanation makes sense, but maybe there’s something more fundamental going on here. Am I wired differently? Is that what this label of alexithymia represents?

Self-Assessment Questionnaires

In my previous blog post about alexithymia I mentioned scoring four and a bit out of six on one self-assessment questionnaire, and 129 out of 185 on the more detailed test at Alexithymia Online. Let’s look at the latter assessment in more detail, as well as a few others I’ve tried since.

Alexithymia Online Test

On this test, 0–94 indicates no alexithymia traits, 95–112 indicates possible alexithymia, and 113–185 indicates alexithymia. As well as an overall score, the test gives a breakdown in a number of areas.

• Overall — high alexithymia traits
• Difficulty identifying feelings — high alexithymia traits
• Difficulty describing feelings — high alexithymia traits
• Externally-oriented thinking — high alexithymia traits
• Restricted emotional processes — high alexithymia traits
• Sexual difficulties and disinterest — high alexithymia traits
• Problematic interpersonal relationships — no alexithymia traits
• Vicarious interpretation of feelings — no alexithymia traits

As you can see, I scored “high” on the test as a whole and in five of the seven sub-categories.

Toronto Alexithymia Scale (TAS-20)

The next test I tried is the Toronto Alexithymia Scale (TAS-20). I scored 70 out of a possible 100, where 0–51 indicates no alexithymia, 52–60 possible alexithymia, and 61–100 alexithymia present. The results invite you to focus on whichever sub-category you score most highly in, but I scored almost equally across the three. (Difficulty Describing Feelings: 23, Difficulty Identifying Feelings: 24, Externally-Oriented Thinking: 23.)

Perth Alexithymia Questionnaire (PEQ)

The third test I tried is offered as a feature of the excellent Animi app, which I’ll describe in more detail later. According to the app, the test is based on the Perth Alexithymia Questionnaire (PEQ). Overall, I scored 137 out of a maximum of 168, which equates to “very high alexithymia.” Subscores are given in five areas. Mine varied between 36/56 (Tendency to not focus attention on one’s own positive or negative emotions) and 25/28 (Difficulty describing and communicating one’s own positive feelings). All represented high to very high alexithymia.

Toronto Empathy Questionnaire (TEQ)

Some resources suggest a link between alexithymia and a lack of empathy or understanding. To explore this, I took the Toronto Empathy Questionnaire (TEQ). I scored 53 out of a maximum of 64. According to the test site, scores of 45 or higher indicate higher than normal empathy.

Animi

Animi is advertised as “the first app dedicated to improving alexithymia, emotional awareness and emotional intelligence.” It’s free to use and available for Android and iPhone. The core of the app is a searchable encyclopedia of emotional states. Each entry (such as afraid, bitter, content, gloomy, to pick a few at random) has a short definition, associated physical symptoms, example situations where it might manifest, the physiological function the emotion performs, and a host of related concepts including analogies, similar feelings, thoughts, expressions, and needs.

As well as searching the encyclopedia directly, the app offers two novel approaches to identifying what you might be feeling. Body Sensations presents you with a mannequin image. You select which part of your body is experiencing physical sensations, and then narrow down your choices. For example, if you select head, there is a slider to categorise the sensations in your head on a scale between detached and intense.

You’re then presented with an Emotional Compass screen where you can clarify things further. This is done by dragging a marker across a square grid. The horizontal axis runs between unpleasant on the left and pleasant on the right. The vertical axis runs between low energy and high energy. Based on where you drag the marker, the app suggests four likely feelings from the encyclopedia, which you can further refine. At any time you can go into the encyclopedia to explore the suggested emotions. When you finally select the emotion that best represents your situation, you are invited to write a few words about what may have led to you feeling this way. These entries build into a personal log.

The second approach bypasses the bodily sensations part and takes you straight to the Emotional Compass screen. As I mentioned earlier, the app also invites you to take an alexithymia test, the results of which are stored in the app and can be reviewed at any time. There’s a link to a Discord forum (Animi app – alexithymia community) which at the time of writing has 218 members. I am not on Discord and haven’t tried the forum, so can’t comment on it’s relevance or value.

There’s a great YouTube video by the app’s developer which I do recommend. There are a lot of very positive comments from people who’ve found the app helpful. I’m not sure how much I’ll use it myself but it does provide a very interesting and accessible route to exploring my emotions and how they manifest for me.

How Does it Feel to Have Alexithymia?

There’s an obvious irony in attempting to describe how I feel about discovering I’ve a personality trait that makes it difficult to express my feelings. In my previous post on alixithymia I mentioned the NVC Feelings Inventory, which is intended to help identify and articulate what we’re feeling in the moment. I’ve always had difficulty with this, but turning to it now, I’d select the following.

Feelings when needs are being met
Empowered
Curious
Interested

Feelings when needs are not being met
Self-conscious
Vulnerable

It certainly feels as though something important is happening as I explore what alexithymia may mean for me. I know I’m not alone in this. Several people I’ve spoken to about alexithymia have said it resonates strongly for them, and I’ve already had some very meaningful conversations with colleagues and friends. I’ll close with something that made me smile the other day. Fran described a conversation she’d had with a mutual friend of ours who she thought would find it relevant.

Did you know, there’s a word for you and Marty. It begins with “A”.

Is it “asshole”?

I checked and “like an asshole” isn’t in the NVC Feelings Inventory. I’ll keep it in mind, however. I’m sure I’ll find a use for it one day!

Over to You

In this post I’ve explored alexithymia in some depth, with links to online self-assessment tests and a helpful app. Does any of this resonate for you? Do you struggle to identify what you’re feeling and communite your emotions to others? If so, I’d love to hear from you, either in the comments below or via our contact page.

 

Photo by Markus Winkler at Unsplash.