[Linkpost] Alexithymia — The Most Overlooked Emotional Health Problem

Author of the manifesto and Animi here. I was also doubtful initially when I was researching alexithymia to improve my condition. But that was gradually changing the more papers I read and the more people I talked with. There are 50+ years of research on the topic, and some papers show more than 10% of the general population with alexithymia score in the "clinical" range where it is correlated with all the associated problems. 1 in 10 actually makes a lot of sense given how prevalent and comorbid it is with mental disorders or i.e. neurodiversity - ~50% of those people are also alexithymic.

It is not always caused by trauma, though obviously, it is one of the possible factors influencing it. And even if it was caused by trauma, I don't find that line of thinking very satisfying, because it isn't actionable. The next step would be going to therapy to work on that trauma. But for people with alexithymia, therapy is much less effective since psychotherapy relies on being able to speak the language of emotions. And most therapists aren't trained to work with alexithymics.

I don't disagree that it can show as a symptom of other severe problems, but calling it a symptom is in my opinion insufficient, because without addressing the symptom it is significantly harder to address the initial severe problem, and research actually shows it exacerbates severity of mental disorder symptoms. So it's more of a risk and mediator / moderator factor that severely influences the symptom severity and treatment outcomes, along with a host of other problems, and hence saying it "severely affects" is justified.

Sources for the claims I'm making are all in the manifesto (100+ studies linked), happy for constructive feedback and open to talking more - it is possible that I'm tunnel-visioned and somewhat biased since I'm working on a solution for it, but I'm not the only one who is thinking this way - you can read this article which makes a similar point - https://www.bhcsmt.com/blog/alexithymia-one-of-the-most-impactful-health-conditions-youve-never-heard-of

Yes, the mechanism is likely not alexithymia directly causing undesirable states like trauma but rather diminishing one's ability to get unstack given that traumatic events happened.

Sorry for the late reply, I didn't have notifications for comments enabled.

1. It is estimated that 10% of the population is in the clinical cutoff range where it is pathological, so 800M people in the world. It might seem like a lot, but if you look at how prevalent it is in various mental disorder populations, it suddenly makes a lot of sense. In short, up to ~50% of people with a mental disorder diagnosis are also alexithymic.
 

• Psychosomatic disorders → 40%−60%
• Anxiety disorders → 13%−58%
• Depressive disorders → 32%−51%
• Eating disorders → 24%−77%
• Addictive disorders → 30%−50%
• Obsessive-compulsive disorders (OCD) → 11-36%
• Attention Deficit and Hyperactivity Disorder (ADHD) → 42%
• Autism spectrum disorders (ASD) → 50%
• Post-traumatic stress disorders (PTSD) → up to 75%
• Borderline personality disorders (BPD) → up to 62%
• Traumatic brain injuries (TBI) → 30%−60%
• Epilepsy → 26-76%
• Psychogenic non-epileptic seizures (PNES) → 30-90%
• Schizophrenia → 30-46%

2. Does it make MH issues more likely or severe? Both, depending on the specific disorder. There are multiple studies in various disorders showing a correlation of alexithymia and symptom severity - be it depression (another one), PTSD (another one), or even others like IBD or trichotillomania. As for MH (and also other physical) issues and their likeliness to be developed in the first place, there is evidence for that - specifically for affective and psychosomatic disorders, where the pathway through emotional dysregulation and somatosensory amplification respectively is relatively clear, and the neural pathways underlying it were explored.

3. There are conflicting studies on whether psychotherapy itself can treat alexithymia, and how alexithymia affects outcomes of therapy. This recent systematic review states that the available data tend largely to correlate low baseline, and/or post-treatment levels of alexithymia and/or an improvement in levels of alexithymia over the course of treatment, with a more favorable outcome of the treatment of the mental disorders considered. My hypothesis is that it very much depends on the training and understanding of the therapist. If the therapist is aware and understands alexithymia, they might be to some degree helpful, even though they don't have good alexithymia-specific tools to offer to their patients currently. But if they are not (which seems to be most of them as alexithymia is not taught about generally, and isn't very well known outside of perhaps people specializing in autistic / psychosomatic areas), then it's a problem and has been shown to hamper therapeutic alliance, and often anecdotally leads to people going from one therapist to another, not being understood. I've heard many stories like that from our users.

Studies on treatability and especially direct treatment of alexithymia are for various historical reasons sparse, so the level of evidence here (specifically in relation to the subgroups) is much lower and less granular than the explanatory and descriptive part. There are however some intervention studies and even a handful of RCTs showing that specifically targeting alexithymia can improve it. Through various approaches, most often through psychoeducational approaches, mindfulness-based interoception and emotional awareness training, emotional schemas building, etc. Unfortunately, most of them are not comprehensive and are addressing only one of the few underlying factors of alexithymia.

That's one of the reasons we're building a solution - we want to create a comprehensive solution building on all this evidence and integrating various synergistic treatments with the help of our scientific advisors who developed some of them - like Dr. Dawn Neumann, who is currently running a Phase II trial focused on improving alexithymia in TBI patients and Dr. Ronald Levant, who is the former director of American Psychological Association and developed Alexithymi Reduction Treatment. The app right now is more of an MVP, ready to integrate the treatments from our scientific advisors, blocked only by funding. However, even now we already see in our internal data improvements in alexithymia scores of our users and actually moderately dose-dependent on the usage of the app. And we have great qualitative feedback both from the users as well as therapists.

4. There are 3 ways it would fit into the current treatment landscape. First of all, raising awareness about alexithymia could lead to more therapists being trained in working with alexithymic patients (that could ideally start with adding it to school curriculums), and therefore screening for it with a questionnaire. Secondly, after identifying alexithymic patients, they could follow recent intervention guidelines for alexithymic patients. Lastly, new tools specifically oriented toward improving alexithymia could be developed. These tools could be provided to self or professionally-diagnosed patients either independently or in adjunct to therapy (both ways are already happening with Animi), and improve their QoL and effectivity of therapy.

There are probably ways how to integrate with seemingly effective solutions or organizations, though that would require more thought, happy to talk. There is probably even an opportunity on the policy side for an org focused on the dissemination of alexithymia awareness among the public, professional groups, and educational institutions, as well as working towards it being included in official manuals like DSM and ICD (currently it is only in DCPR - Diagnostic Criteria for Psychosomatic Research), providing an incentive drive for all parties and easier way for insurance reimbursement of treatment, unlocking the market forces. I'd be willing to collaborate on an org like that, though I don't think I have the best experience, network, or personality to be the most effective in that area, and I'm currently mostly dedicated to building a proper and easily scalable solution.