Anyone with Alexithymia?

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According to my research about up to 50% of autistics have Alexithymia, a higher portion of people with bpd have significant scores in Alexithymia too, than the general population.

If anyone doesn't know, Alexithymia is the inability to identify, describe and express emotions. While we *do* have emotions, we're perhaps intellectually unaware of them. Many of us can pin point basic ones, like 'happy/sad' maybe angry or stressed but things like jealousy and anxiety might be hard to pin point. In fact I'm struggling to think of additional emotive words to explain this further...

I was thinking of joining a support group online and found only 1... and it's mostly dead. So I'm wondering how many other Alex's might be interested in a forum if I were to make one?
While I like talking on here, it might be nice to have a space that's suited to explaining the condition and letting people freely talk about it, sharing things like how to understand emotions better and stuff.

*shrugs* Just wanted to see if there's any interest for it. I've gained a little so far. =]

I would be very interested in participating in a forum on alexithymia. With my autism I also have callosar dysgenesis causing split brain syndrome and that results in a more extreme lack of integration between affect and somatic sensation on one hand and verbal expression, executive function, and cognition on the other. I have a hard time describing emotions - feelings in the context of thought and expression. Feelings for me just aren't correlated so much with thoughts - it's like two different worlds. Like apples and semicolons... I just brought up my alexithymia and near inability to describe my physical state to my doctor yesterday - I've very nearly died from that in the past. Tuberculosis that progressed to be nearly fatal before I said anything, thyroid failure almost ending in coma before going to the hospital, B12 deficiency that progressed to neuropathy and emergency visits for extreme gastritis - repeatedly I think I'm able to say how I feel, but I give 'convenient answers'. Very much the same thing I do with respect to questions about my internal feeling state. It's not connected for me - scrambled salad communication. I could potentially be feeling almost anything at a given time. So beyond the difficulty in knowing and acting on emotional-type feelings is the real danger of ignoring pain, somatic feelings, and illnesses. Thanks for suggesting this - I hope there are some other folks interested in exploring it as well. I'm about to turn 58 and it's my biggest issue. I've learned tools to succeed in life with my autism in many ways, but inability to know or say how I'm feeling, emotionally or physically, has me on the ropes.

Omg, my cat just erased everything I wrote...

I just wanted to say thanks for your reply and I hope we get more interest too as I really want to make this happen. =] I think we're a mostly ignored group and it'd be nice to change that.

It was interesting to hear your experiences, I might have to look up your condition as I've never heard of it.
My experience with my physical health is almost the opposite. I'm actually very aware of my body. I tend to do a lot of personal tests and research so I've ruled out a lot of things before I ever go to the Drs.
Because I find it so hard to verbalise sensations and feelings, I have to do more research to figure out the kind of wording people might use for it.
Eg, to me, exercise doesn't cause a 'burning' sensation, being touched unexpectedly does instead. Brain Fog makes little sense to me as a descriptive.
By the time I go to the Drs, my symptoms are normally fairly significant, but reasonable to be concerned about. However Drs instead assume it's psychosomatic.
They also assume you don't know the right words to use, EG, I say I have a chronic headache and they ask me how long it lasts (the answer would be about 20 years, but what do they really mean by asking that?)

I won't go into details before my cat erases this again *curses* but it's taken between 2-10 years to be diagnosed with different conditions of mine, each time because they spend years assuming its psychosomatic, and I'm certain it's not. And not once have I been proven wrong, each concern is always found to be physical in nature and significant (all but the current one they're only about 10 months into wasting time with). Some caused preventable but permanent damage.

I hope it doesn't seem like a health competition! But I meant to compare how your health was jeopardized by your lack of understanding of mind/body (if I understood correctly) and mind due to the Drs assuming I have lack of understanding of my body.

My conclusion was basically, I am grateful Alexithymia isn't a clinical diagnosis, or I'd probably never have been given a chance to get real tests to prove I really did have health problems.
Even now, I had a Dr suggest my genetic condition was psychosomatic, purely because he didn't know what it was. With those kinds of professionals, it might be knowledge they can't handle.

Especially as their treatment would be antidepressants or some other kind of emotional sedative. Surely that'd be the worst thing for us, when we if anything, need therapy to understand our emotions more, not numb the little bit of awareness we may have.

I just found out about this condition and I know this is me.I would be interested in a support group, it's so hard to share thoughts with anyone, but when you share the same thing together it's a little easier. When things are tense between my husband and I, I get a pain in my chest that lasts for hours or days. I didn't realize the correlation until after reading about Alexithymia. I was seeing a counselor and she kept asking how I felt about something,I literally had no idea,and I didn't know what to say. I found that when I drink, it helps me to better see my feelings, but it also brings up too much too fast and it gets overwhelming too.There's just so much to this,but the worst part is that it's tearing apart my marriage, I don't understand his feelings,and I'm always saying the wrong thing. It's good to know that just like Aspergers, there is a name for this, but now what?

Hey Camillion,

I've created the forum, it can be found here; http://alexithymia.createaforum.com/

In regards to your question 'now what?' I suppose it depends on what you want. I personally am hoping a support group of sorts will help provide both education of the syndrome and provide a place for people to be able to share coping mechanisms, ways to understand others better, how to decode physical symptoms and thoughts into the relevant emotion etc.

I'm aiming to find a way to add files to the site I've made so I can share the worksheets and information on emotional recognition. If it helps to know, they're mostly DBT and CBT based therapies on emotional regulation, commonly used in people with Borderline Personality Disorder. But they can help to a degree with us.
I'm also hoping to share information on studies on this syndrome.

It just happens I'm a technophobe so running a forum is certainly new XD But I'm hoping we'll get more users soon with a bit more advertising and it'd be great to have you there. =]

I just did a post on this. Yes, we can identify emotions, but only VERY VERY STRONG ONES.

Thanks for the reply Alomoes but I was asking if people wanted a Alexithymia Forum, which I'd made now. It's linked above and also in my signature.
I definitely agree with you on being *able* to identify some emotions when they're strong. I normally feel 'emotional mess' inside, but I picture it as big black and white scribbles, they don't mean anything, maybe they're mixed emotions.
But I can know if I'm very happy, sad or angry. Emotions between those are a bit more confusing. >__<

I was going to go introduce myself on the alexithymia forum, but it seems to be closed for maintenance. I'll definitely be interested when it's back up and running.

I got rather forcefully reminded of my issues with this just recently. I experienced romantic rejection last week, and I won't lie, it was pretty disappointing. Best thing I'd had going for years, so I thought. At any rate I took it very calmly at the time - so much so that I got a rather surprised look from the other person. I thought that was that and I could go on with my life, but evidently combined with other unpleasantnesses of life lately, it did wear me down - so days later I suddenly fell apart, and lost almost a full week to it where I could barely do anything sensible.

Far from the first time this happens. I'm not sure how to approach this kind of thing; if I go for the other extreme and assume I'm going to handle it very badly, I keep second-guessing myself and thinking I'm exaggerating the impact. And finding the happy medium seems very elusive.

Hi @Salkin,
Sorry for the delay but it's up and running now. I'm still getting to grips with using the site! O.O

I do think one of the hard things about Alexithymia is the delay in emotional response. So much effort is then spent on trying to figure out where said feelings came from, and its even harder to resolve them without full knowledge.

I think i understand the last part, about either handling it too coldly or feeling like you're exaggerating it. I think for us, we're so used to not seeing or recognising our emotions, any emotion we notice we'd probably think is over done to a degree. I certainly think that myself.

My parents have told me that I have Alexithymia.

Whether or not it's true is harder to say. Whenever I read things about emotional stuff like this, I can't tell if it matches me or not. Sometimes I can remember the emotions I felt a few hours or days ago, but most of the time I can't. A lot of the time I remember it, I can remember the name of the emotion, but not the emotion itself.

Does anything I just typed make sense?

To be fair, the best person to 'diagnose' you with Alexithymia is yourself.
We all experience emotions differently, it's hard for someone on the outside to know if you have it. Maybe your language for expressing emotions is different but still intact for example.

My experience of Alexithymia isn't like yours but I'm not representative of all Alexes so I can't say if it is or isn't part of that syndrome. But remembering a name of an emotion sounds more intellectual, not emotional. We have no probelwm with intellectual sides of things, we just don't really seem wired up with our emotions.

For me, I feel like I'm a robot, and if I'm experiencing emotions, most often than not, it's more like I'm looking at someone else and trying to feel their emotions. I can't do that, and similarly, can't really tell what my emotions are from *feelings*. I have to observe my behaviour over a period of time, categorise it, and come to a conclusion of the 'whys' before I can label it. It's very factual, which means I miss a lot of it, and confusing, mixed or subtle emotions are generally missed or felt as 'internal mess'.
I rarely can pick out names for my own emotions, but I can name emotions fairly well.

Yep, I most certainly do. I learned about it here from one of the more eccentric members. During the week my emotions completely dissipate. I only get them back during weekends or away from the city.

Hmm, do you mean that you take about a week to figure out your emotions, or that you only recognise them on weekends (presumably when you're more relaxed).
Because if it's the latter, it sounds situational, which doesn't sound like Alexithymia which is a consistent thing. o.o

My work is a powerful diversion for the majority of my brainpower. I'm editing 3D models on one of the biggest databases in the world all day and when I leave the office I'm studying free software, digital security/forensics and/or more 3D constructs.

In short it is situational for me in that it's the only mental state I find time for.

It is confusing for me, because for a long time I was sensitive to other peoples emotions, but was not consciously aware of this, you know... everyone is like me, right? Unless it was a strong emotion I was unaware of how I felt, I just taught I was laid back about everything emotional. I score as having high Alexithymia.

That's quite an interesting case. I can't say if my brain is focused on other things to the extent it doesn't have the brain power for emotional understanding. But yeah generally the criteria (if you can say we have anything that sophisticated) is that it's enduring and long term.
I do believe everything is on a spectrum though, and as such you don't really just have an in group or out group in anything.


Did you lose that empathy to others or just notice you had more sensitivity to others emotions and not much for your own? I know a fair amount of people with alexithymia who are very empathetic, which is very strange but shows how much we understand things like empathy generally. =]
I think often with those friends I mentioned, they're so aware of others emotions, it's hard to tell what their own are. So they often feel detached from the emotional stimuli they're getting, as most of it isn't theirs. Meaning sometimes, even their own emotions are somehow interpreted as not theirs, so not registered as such. Uhh.. if that makes sense.