You have been told you have alexithymia: Now, what? (Post for patients)

Let’s first answer: What is alexithymia?
Basically, it means, not having words for emotions (a=not having, lexi=word, thymia=emotion) or in other words, having a hard time identifying and describing feelings.  In psychogenic non-epileptic seizures (PNES), it is quite common to have some degree of alexithymia.  By the way, alexithymia can also occur in individuals who do not suffer from PNES or functional neurological disorders (FND).

How does alexithymia look? How does it present itself?

Typically, someone with alexithymia will have trouble

1. a) identifying emotion in a situation,
2. b) detecting and recognizing emotions not only in her/himself but also in others,

and c) assigning a name to their emotions.

So, for example, if you and your brother (John) both flew all the way to your mother’s birthday party from out of state and she exclaims, “It is so wonderful to have John here today; this has really made my day!” and your presence is not acknowledged in any meaningful way….

When you have alexithymia,
a) You may not fully recognize that comment as somewhat hurtful,
b) Although you may experience physiological changes (gut reaction), you may only vaguely be aware of these, if at all
c) Because you did not quite recognize the comment as offensive and did not register the changes in your body, you won’t be consciously aware that perhaps you feel a bit hurt and overlooked. However, the emotion is there and now it starts to reverberate albeit unconsciously and it sets in motion something called emotional dysregulation.

What’s the big deal? It is a big deal because emotion serves a purpose of being a signal of sorts (it helps us know if a situation is dangerous, joyful, upsetting, etc.).  Emotion is also energy and it requires we do something with it or else it continues to flow unchecked in our body and in the long run can erupt in the form of seizures.

So, later that week, when your therapist asks you: Has anything stressed you this week?  It should not surprise you if you are not able to identify that incident as “stressful” and may answer: “No, I had several seizures but nothing stressful happened this week.”

Now, if the situation is even more complex, with conflicting emotions, the challenge increases exponentially when you have alexithymia. For example, if your husband was just forced to take an early retirement and you are also somewhat happy to have him home with you, you may experience feelings of empathy and concern for him but also perhaps excitement and happiness to have him spend time at home with you.  For someone with alexithymia, this can be especially complicated to identify and verbalize and results in persisting emotional energy that does not find an adequate outlet.

Now you may ask, what can I do about this?

There are a few options that come to mind with one of the first being, begin to practice mindfulness. According to Oxford Languages (Google), mindfulness is “a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations.”  Practicing mindfulness will allow you to pay attention to the thoughts and feelings coming and going in your mind/body, as well as to connect with your body (physiological changes).  There is an excellent book called “Full Catastrophe Living” by Jon Kabat-Zinn that I often recommend. In this technological era, there are also mindfulness apps (e.g. Headspace, Calm, etc.) that you may find useful and convenient.  Remember though, to get the most out of mindfulness you need to practice consistently. But also remember that mindfulness is not necessarily just you sitting there cross-legged and saying “om;” you may practice mindful walking, eating, exercising, etc.  You may choose to be mindful before leaving for work or before falling asleep.  There are many options.

Second, it is helpful to increase your knowledge about emotions themselves and for that I recommend turning to facial expression charts. Those are those posters with rows of faces with slightly different expressions and with an emotion printed beneath it.  Those who have alexithymia can have a harder time than most in discriminating negative emotions from positive ones.  I recommend you study the faces, their mouths, eyes, and work on learning the emotion that goes with it.

You can also work on augmenting your emotion word vocabulary. to increase your accuracy in describing your emotions.  So, instead of describing your emotions as “good, bad, sad, angry,” you might begin to practice using more nuanced words. Tease things apart and perhaps choose to describe yourself as “puzzled, or annoyed, or irritated, or outraged, or overwhelmed, or hopeful, or cheerful, or light-hearted” and so forth.

Also very important: Read up on assertiveness and how to become more assertive because once you become more adept at recognizing your emotions, you will need to be able to “do something about them” and assertiveness comes into play.  You may find writing short scripts or even having bullet points when talking on the phone might be useful.  There are also a number of assertiveness and self-esteem workbooks that you can look into before you decide which is for you.  Assertiveness might look like this in the example we read above in which the birthday mother overlooked her daughter.  An assertive statement might be: “Wow, mom, I felt very hurt by your comment just now since I am also here with you on your special day.”  In this case, depending on the family dynamics your mom might respond in a multitude of ways, but regardless, it is important that the daughter have been able to turn that emotion into a statement.

Lastly, remember, when you begin to feel those feelings, don’t be surprised if it feels unfamiliar and even a bit uncomfortable.  But on a plus side, it is not unexpected that your seizures and other functional symptoms may begin to reduce in frequency or intensity.  This is because when emotion is not suppressed, it is not converted into a physical (psychogenic or functional) symptom.