A guy holding up a poster in front of their face with a sad emoticon on it, while holding their phone.

No, Really, I’m Fine (on Alexithymia)6 min read

A guy holding up a poster in front of their face with a sad emoticon on it, while holding their phone.If I were to ask you how you are feeling, or how you have been, niceties and the con­ven­tions of small-talk aside, what would your answer be?

I rarely, if ever have an answer, and I will default to telling you that I am fine. Because largely, and often in the moment, I am. I am alex­ithymic, and without con­scious and sig­nif­i­cant effort, am unable to know, process, or com­mu­ni­cate the emo­tions I am feeling at any given time.

I am often also impaired in my ability to per­ceive and under­stand the emo­tions present in others, which means that my responses are mis­di­rected, mis­placed, or lacking entirely.

It is 12pm, and I am (rel­a­tively recently) fed and watered. My stomach is bub­bling, and I cannot tell why. Am I hungry? Thirsty (still?)? Sad? Anxious? Perhaps I forgot to take one of my med­ica­tions? Did I have enough to eat for break­fast this morning? Or am I sick?

Because I am unable figure out the answer, I will often run through a check­list of actions– taking pills, eating more, drinking more, reflecting on every­thing that has hap­pened to me recently in an inves­tiga­tive effort to pin down the cause through a process of elim­i­na­tion. Sometimes I have help, but it doesn’t nec­es­sarily make any dif­fer­ence.

Black woman in a thinking pose, confused, sitting down while holding a pink donut with sprinkles in a blue sweater.

I am on the bed in the doctor’s office because my neck has been aching for longer than I can remember. She tells me she is going to press lightly on the area, and that she wants me to tell her if it hurts when she does so. I can feel her pressing, and it feels uncom­fort­able, so I ask her how much it is sup­posed to hurt and whether I am sup­posed to be feeling any­thing at all.

She is kind and patient, but she repeats, “Tell me if it hurts when I press down on this area.” Confused, I think about how the pain is right down inside my neck. It can come and go, and that unless she presses right down in there, the exer­cise is point­less, so I tell her every­thing is fine. I’m not fine, my neck has been aching for longer than I remember and we are no closer to finding out why.

Alexithymia (quite lit­er­ally ‘without words for emo­tions’) is a psy­cho­log­ical con­struct present in 10% of the pop­u­la­tion. It varies in severity among indi­vid­uals. Alexithymic people have dif­fi­culty under­standing, pro­cessing and ver­bal­ising their own feel­ings and sen­sa­tions, and recog­nising or under­standing the emo­tions of others.

A majority of my emo­tions man­i­fest as intense and often-uncomfortable or painful sen­sa­tions in my head and torso, and beyond being able to describe them as either good or bad, I do not under­stand what they mean.

Alexithymia is often co-mborbid with a range of neu­rode­vel­op­mental and psy­chi­atric dis­or­ders including ADHD, autism, clin­ical depres­sion, OCD, PTSD, and anx­iety, and being alex­ithymic can impair or alter an individual’s response to med­ica­tions and treat­ments for a range of related and unre­lated med­ical con­di­tions.

How can you know whether your symp­toms are wors­ening or improving when you don’t know what the sen­sa­tions you are feeling mean? Similarly, it can be hard– if not impos­sible– to rec­og­nize and inter­pret the body’s sig­nals for hunger, thirst, elim­i­na­tion, and ill-health. As such, many of us still struggle with nutri­tional intake and self-care– delaying seeking med­ical treat­ment until it is later than is ideal (or not at all).

An Asian woman looking confused while holding her hand on her hair by her forehead with her eyes looking up and off to the side, away from the camera.

It is a common mis­con­cep­tion that indi­vid­uals with alex­ithymia do not feel any emo­tion at all. I feel so much. Too much, I feel, and have been told so throughout the course of my life. In between feel­ings and sen­sa­tions, I am empty in a way that is not apathy (which can also be prob­lem­atic), but neu­trality, and until I was aware of my alex­ithymia, I thought it meant that I was broken or defi­cient.

Then would come days where I would feel charged, warm, some might say happy– elated even, and I would worry and sulk through it all as if it might be the last happy day in my life. Of the emotions/feelings I can recog­nise, there is anx­iety (although I can and will con­fuse this for excite­ment), rage, over­whelm, apathy, dis­ap­point­ment, guilt, shame, and ela­tion.

I struggle with boredom, anger, love, hate, jeal­ousy, pride, hap­pi­ness, and ‘feeling okay’. Truly okay. At times it has felt like a prison, but at other times it is freeing.

I have some con­trol over my response to external stimuli, in that playing a song I love repeat­edly will evoke the same feeling at the same inten­sity for really extended periods of time. I am still learning not to overdo it and burn out, because then it is dif­fi­cult to feel any­thing at all for a while.

On a phys­i­o­log­ical level, it is dif­fi­cult to know what to do with my face, my body, and my voice. Because of alex­ithymia, I often do not know how to mod­u­late my tone of voice and inflect my spoken words and sen­tences. We might be talking about some­thing you are excited for, or you might be showing me some­thing you made recently.

I like it, and I am glad you’re happy, but I do not feel it, or any­thing, and I’m not at all sure what to do with my voice when I am talking to you. Over the years, I have refined the voice and facial expres­sions I use when I need to give an emo­tional or sup­portive response to some­thing, but it is still guess­work.

Immediately, or over time, people pick up on this and respond in a variety of (usu­ally angry or dis­ap­pointed) ways. Manipulating my responses in these ways takes up a whole lot of energy. It gives me tremen­dous anx­iety, because I want to feel with you, I want you to hear me feeling with you, but I can’t.

I wish I lived in a world where I didn’t have to mask or change myself to keep others feeling val­i­dated and secure.

Three lightbulbs with bright question marks on them.

In other con­texts, I do not know how to plan ahead because I do not know how I am going to be feeling or what I am going to be capable of achieving on any given day. In small ways, this affects my ability to plan and struc­ture to-do lists, sto­ries, and arti­cles; and in large ways, it man­i­fests as a pro­found inability to agree to plans, make appoint­ments, and set long-term and sus­tain­able goals.

I have ADHD and autism, two neu­rode­vel­op­mental dis­or­ders in con­stant con­flict with one another for my capacity and ability to create and utilise rou­tine and order, with alex­ithymia hanging out for the ride just to make things that much more dif­fi­cult.

Being told that I am alex­ithymic has shifted my under­standing of the events of the majority of my life, and for that I feel freed. Not having words for many of my emo­tions, means that I have had the space to find cre­ative ways to com­mu­ni­cate what I am feeling in the form of elab­o­rate metaphors and alter­na­tive verbal expres­sions for my state of being.

photographyNot having feel­ings in moments in which others might means that I am free to take per­spec­tives that others cannot, because their ability to do so is obscured by what they are feeling in the moment. Mentally, I make a game of likening things to other things, and it feels so, so good when my recip­ient gets it.

Then, there is the fact that once I’ve gone through the throes of sad­ness, having come out the other side and, like for­get­ting how HOT hot is when you are freezing cold, I can no longer remember what it felt like to be sad.

Ultimately, I would wish for there to be greater gen­eral aware­ness towards alex­ithymia, ADHD, and autism, as I am still buck­ling under the weight of having been– and the anx­iety or like­li­hood that I will con­tinue to be– mis­un­der­stood.

I am grateful for the internet in this and the many sup­port groups I have found– safe havens in which to dis­cuss the things I have not been able to com­mu­ni­cate or under­stand as being things that are not per­sonal fail­ures or inad­e­qua­cies until now.

I’m fine, though, and it is both ter­ri­fying and redeeming that I largely always will be, even when I’m not.

3 Comments


  1. Love your well written words!

    I do have an issue with the term Alexithymia. It is not ever that absolute: it should be called Dyslexithymia.

  2. So glad I found this post again because I needed a word describing what I’m going through. And I find it ironic that the com­ment sec­tions asks “what are you thinking?” Cause that’s a loaded ques­tion.

    Anyways—this is prob­ably the first thing I noticed relates to com­mu­ni­ca­tion issues and me fig­uring if I’m autistic. I have tons of emo­tions. But I can’t catch them soon enough or name them. Luckily my ther­a­pist doesn’t let me get away without doing that. But my self care journal (new toy) has a sec­tion for mood and I’m trying really hard to write down every­thing I feel in a day. I’m aver­aging 2–8 emo­tions on any given day. WAY TOO MUCH in my mind. And not being able to name them, under­stand them? It makes life hard.

    So thank you. For a def­i­n­i­tion. For a word. For under­standing.

Talk to us... what are you thinking?