My Alexithymia Journey: A Heal-Along with Jaena

So, here were are again with another companion article. I do these whenever I have a personal story that can help shed further light on our main topic. Since this week’s topic is on Alexithymia, what it is, how it develops, and (as always) what we can do about it, I have my own experiences to add. As you may have guessed from the title, I am alexithymic. But I’ve also come a long, long way since my diagnosis three years ago. And that’s why I’m sharing my alexithymia journey with you. I hope it gives you fresh insights and maybe even inspire you too. But I also hope you learn from the mistakes I have made. Because believe me, I’m sort of the queen of making those.

This is also for those who have been curious when I’ve explained my condition. The questions usually go in this order: 1) What is it? (See this week’s main topic article here.) 2) What’s it like living with alexithymia? (To which I jokingly respond, “okay,” because that’s how alexithymics usually feel.) 3) How did you find out you have this? (I was formally diagnosed.) But how my therapist noticed my symptoms is an interesting story worth expanding on in a bit.

What Caused My Alexithymia?

My alexithymia didn’t develop until age twenty-two. That was when I yanked myself out of my depersonalization period, which had lasted a full year. The thing about depersonalization is, it decreases activation in over two-thirds of the brain. That’s why we get so much brain fog and feel disconnected from our thoughts, feelings, and even from our own bodies. Believe me, after a year inside that headspace, I was desperate feel me again. So, at age twenty-two I got active and stayed busy. It seemed to be working, and so I kept doing it. The brain fog was lifting and I no longer felt like an outside observer of my own body. But there was something missing and I couldn’t quite figure out what it was. Some mysterious numbness but most startling was how I had lost my ability to grieve.

As it turns out, getting active and staying busy helped my brain resume its normal activation except for two little parts of my brain. My insula and anterior cingulate never came back online. I explained the significance of those two parts in the main article. Just suffice to say that I kept thinking and doing. I got addicted to both book hoarding and workaholism and never got around to exploring my feelings. These very actions ensured that those two parts of my brain would stay offline and therefore, my alexithymia remained untreated for a whopping total of twenty-three years. Please learn from this mistake.

My Alexithymia Years with “Okay” Feelings, Except Anger…

It isn’t uncommon for alexithymics to have one emotion that they can freely feel and express while having trouble understanding all the others. Anger was mine, as it was overcompensating for my blocked grief. (See also Blocked Emotions in Trauma Glossary 2.) But even that emotion could sneak up on me until it had nowhere to go but out. And then I would roar.

All the rest of my emotions didn’t register. Even when they hit high octane levels, they were short-lived and misinterpreted. Below are my best examples.

Panic Attacks

I have always had a fear of hydroplaning. So, driving to work during a flash flood warning has always terrified me. Except of course, I never thought of using that word to describe it. And yet, I was showing every sign of a panic attack. The white knuckle grip on the steering wheel, the way that my breathing would shift between holding my breath to rapid and shallow breaths. Then, once I finally arrived safely in the parking lot, I took a few ragged breaths and said simply, “That was so stressful.” And then it was over. That’s how I interpreted my panic attacks. It never even registered that my heart was racing.

No words for Drained or Overwhelmed

I used to get drained around people a lot, except I didn’t know there was a word for it. I just interpreted it as having an urge to get away and be by myself for a little while. As a workaholic, I used to overwhelm myself all the time. Except I only knew that one as a word used to describe an action. For example, The Battle of Cowpens was an overwhelming defeat of Tarleton’s Army.

It’s amazing to me now, how I could work fourteen hours straight all because feeling drained and overwhelmed never registered. I felt “okay” until on some nights, it would catch up to me. When those feelings reached fever pitch, I had no idea what was going on with me. I just got swamped by the notion that I couldn’t move to the next task. The closest I came to interpreting such feelings went something like this: “I don’t have enough of…something in me to keep going.” Then I would feel “sad,” trickle out a few tears, and then tell myself to “Buck up, there’s lots of work that still needs to be done.” And I felt “okay” again that quickly.

Grieving: my “3 second wonders”

Having blocked grief doesn’t mean I never cried. It just took a lot to get there. And even on those rare occasions, it would trickle out briefly like a clogged faucet. Then it would be over as quickly as it came. That’s why I called them my “3 second wonders” because even when I wanted to cry, I couldn’t get my grief to last longer than mere seconds.

Flash-Forward 22 years: Let the Therapy Begin

I can’t speak for all alexithymics, of course. But it seems to me that when we feel emotionally “okay” most of the time, we’re not likely to think there’s a problem. At least not emotionally. Given how slow the research has been on alexithymia, I think I’m on to something. It seems most of us are diagnosed because we started therapy due to a different problem. I know it was the case for me. I started therapy because I found out I had every single symptom of Complex-PTSD and I panicked. My knee-jerk reaction was, “I don’t want this, get rid of it now!” So, seeing as how the most popular treatment for this was EMDR and it sounded like a quickie-cure, I contacted my insurance and insisted that I needed EMDR therapy. Now!

Please learn from this mistake. First, CPTSD is a lifetime condition. Even EMDR won’t cure it. EMDR is not recommended for those with alexithymia. It’s also important that we get a strong foothold on our trauma before we begin EMDR. You see, EMDR is intense and alexithymics hate high octane emotions but those are the very emotions that will come up in EMDR. It also relies on knowing our feelings and where we feel the emotion in our bodies. Both things we have trouble understanding. I knew none of this “fine print” when I started EMDR, of course. Add to it how it was a year into therapy before my therapist noticed something in how I was describing my feelings and then asked me specific questions. Why did it take my therapist a year to detect my alexithymia? Oh, wait for it…

I Thought EMDR Was “Woo”

Just in case you’ve never heard the term woo, it was coined by non-believers to describe the practices of the believers. Seeing the believers as extremely weird, the non-believers needed a new word that helped them describe something as more than just weird. So, woo became the new word.

While I can’t imagine calling a believer such an insulting term, I must admit that when I looked up EMDR, I could think of no better term to describe my impression than woo. What did flashing lights or moving your finger back and forth while the patient processed the traumatic event have to do with this miracle cure? And what’s up with phase 6, the body scan? But it was so heavily promoted, I made peace with the fact that I had to do some woo stuff so that I wouldn’t have CPTSD anymore.

So, this was the assumption I held in each EMDR session. When my EMDR therapist asked me how I felt in each of my traumas (in a time before I developed alexithymia), I of course remembered the feelings. So, I answered him honestly and all the while, I assumed that I didn’t feel anything towards the memory today because of all the time that had passed. Then he asked, “Where do you feel it in your body?” My emotional body sensations were so dead to me, I once again made a false assumption. I assumed he was flinging woo language at me, and so I played along. I used metaphors. For example, in one memory I felt like the weight of the world was on my shoulders, so I would respond, “shoulders.”

Please learn from this mistake.

My accidental dishonesty with my EMDR therapist cost me dearly. What I thought would only take weeks took eight and a half months. And that was just my EMDR period. To say that I had a tough time in EMDR would be an understatement. Each memory we processed opened the floodgates of emotions. The only silver lining was, my grief was definitely not blocked for eight and a half months. The side effects, alone had me crying every day between sessions. The problem was, I was stuck in the “too much” zone, the high octane emotions I despised. EMDR felt like emotional shock therapy, and I missed my “okay” feelings terribly.

How My Therapist Noticed My Alexithymia

Clue number one

Naturally, it was post-EMDR when my emotions returned to the “okay” comfort zone. My EMDR therapist was now just my “talk” therapist. I think his first clue was the day he gave me ten print-outs. They were from DBT and they were titled “Ways to Describe Emotions.” Each sheet was a thorough breakdown of a different emotion. I will never forget how blown away I was, I just couldn’t peel my eyes off them. There was even a sheet for disgust. I thought disgusted was just a word for vomiting. Yet here it was, described as an emotion. I told my therapist that this was the most fascinating stuff I had ever seen and I wondered how many of them I was capable of feeling.

My therapist then asked me to describe love. One of those DBT sheets was titled Love, so I pulled it from the stack. Then he said, “No, describe love without looking at the sheets.” I stared at him blankly. I had no idea. But I certainly had a strong urge to go home and study those sheets. It’s for this very reason those DBT sheets are listed under tools for alexithymia in Master Toolbox 1, because I will never forget how mesmerized I was when I first saw them.

Clue number two

A few sessions later, my therapist asked me how I was feeling and I responded, “Okay.” Then he said that “okay” isn’t an emotion. But having thoroughly studied those DBT sheets, I told him I didn’t feel any of those, so how was I supposed to word it?

So, my therapist tried again. He opened his arms in a way of demonstrating a scale. One side represented the joyful side, while the other represented sad or angry. He said, “If you’re not all the way on one side or the other, you’re somewhere in the middle, right?” I nodded in agreement. Then he said, “That means you feel…what?”

“Okay?” I responded, absolutely confused. That’s when my therapist burst out laughing and high-fived me. Laughter has always been infectious for me, so I laughed too, though I had no idea what I said that was so funny.

Once my therapist calmed down, he said, “You are definitely alexithymic.” That’s when he educated me on alexithymia and introduced me to emotion charts and emotion wheels.

My Alexithymia Epilogue

I would later on ask for a copy of my therapist’s cognition sheet because it occurred to me that using it with my emotion wheel would help me glean deeper insights into what was going on with me emotionally. I was right. That’s why the cognition sheet is also listed under tools for alexithymia. But I added one more tool to my arsenal and it helped me get to know myself and flourish like never before. It was my Reflections x3 Bullet Journaling Formula. Of course I wrote a series of articles (5 total) on how to set up your own and what it can do for you. I use it to this very day.

Not only did I have something that forced me to check in and reflect on my day using my tools. I was also able to keep both my emotion wheel and cognition sheet in there. Triple win!

I got proactive on my alexithymia and dedicated each day to checking in with my tools. No off days allowed. I had no idea if I would ever beat my alexithymia, but all I could think was, If I could remember a time before I developed alexithymia, then surely it meant I could get my emotional awareness back. It took me three years of daily check-ins, but my insula finally came back online.

Three Years Later: My First Emotional Body Sensation

I was leaving my job of twenty-eight years and naturally, it was causing daily anxiety. So, on one October night in 2022, I was feeling the same anxiety as the day before, except I felt the faintest rush along the tops of my thighs. It was like a weak radio signal, so faint and fleeting, I wasn’t sure if it was real or if I had just imagined it. Then, the very next night, I was feeling anxious and the same rush across the tops of my thighs occurred. Only this time, the “radio signal” came in clear. That was definitely an emotional body sensation. I hadn’t felt one of those since right before my depersonalization period at age 21. I was now 48 years old. It may have been offline for twenty-seven years, but my insula was now up and running.

What a difference a diagnosis makes! In three years, I was able to take control of my alexithymia. Imagine where I would have been today had I not known anything about it. That’s why the 3 trauma glossaries exist on this site, they will always be free, and they will always be ongoing. Because there’s always something new to learn and it’s worthy of being added to one of our glossaries. Once we learn what our problems are, we can start to find ways of working through them.

I have slowly become aware of more emotional body sensations, but I am still working on other emotions that haven’t quite connected with any body sensations. So, while I’ve gotten bigger than my alexithymia, I am still a work in progress. I can tell you this much though: there will be a day when I get to proudly announce that I am no longer alexithymic.