12 Comments
May 13Liked by Awais Aftab

Great read as usual! I know I often post "great read" comments on your blog, but I really feel this one.

Once upon a time, there was talk of maybe slapping "schizo-affective" on me, but for some reason that I can't remember now, it never happened, and I'm left with "maybe somewhere on the schizo-spectrum". I think this was good, because I think it's true that I've had some real mood swings occasionally, like on a pathological level, but I'm also sure that looking at my adult life as a whole (and I'm 47 so that's quite some time now), pathological mood swings have been more an exception than a rule. And even less frequent as I age. But who knows? Maybe if I got that schizo-affective diagnosis in my early twenties, it would have shaped my identity and I would have become that way to a higher extent.

I also remember my mum, at one point, being certain I was autistic after reading articles about it, while my then-psychiatrist was dead certain I wasn't. I was never really evaluated for this. Maybe I would fit an autism diagnosis now, over a quarter of a century later when the diagnosis has widened so much. But I don't see any point, really. I'll be the same person with or without an autism diagnosis. I still don't wanna shit on adults who feel that it's really important to get a diagnosis late in life - you do you - but for me personally, it feels pointless.

Expand full comment
author

Thank you Sofia! Your experience is so relevant to the discussion in the post!

P.S. Your "great read" comments are always appreciated :)

Expand full comment
May 12Liked by Awais Aftab

I can't help but consider a gender dysphoria diagnosis and the extreme changes that are created from hormone therapy. Why this feels controversial to bring up here is confusing to me and yet as I write this it does, regardless of how apropos the article is to the topic. It is a diagnosis that defines identity and with regard to medication (or hormones in this case) it's not only a period of time coming off a drug, it is a lifetime of being unable to undo the effects of hormone treatment. This quote, "I am conscious of what can go wrong when people build identities around diagnoses" becomes even more complex and confounding, but seems important to mention.

Expand full comment
May 13Liked by Awais Aftab

Look, I know several people whose gender identities are more fluid and complicated than captured by the diagnosis they got. They're very happy with their treatments, and don't even expect a medical diagnosis or medical records to perfectly capture who they truly are.

Sure, this is anecdotal and only based on people I know, but I think trans people who have received gender reassignment treatment tend to be MORE critical towards exact diagnostic labels etc than lots of psych patients and neurodivergent people.

But times are hard for trans folks who seek medical treatment now, in Sweden, the UK (the two places I know best on this topic), and many other countries. Yes, every person who regrets going through treatment and tries to backpedal is a tragedy. But people who are denied treatment they need and forced to live with horrible dysphoria (or, in some cases, not go on living) are tragedies TOO. People who eventually go through gender reassignment, but not until they're well into their middle age, when SO MANY irreversible bodily changes in an either masculine or feminine direction have happened already, are tragedies.

Moreover, people who actually regret medical treatment (not to be confused with those who experiment with different clothes, names etc for a while and then go back) are very FEW compared to what we see in lots of other medical treatments. Yet, other medical treatments aren't similarly discussed. We don't have media discussions all over the place about how we should stop doing gastric bypass surgeries due to the quite large number of patients who regret them, we don't hear discussions how we shouldn't do knee surgeries since they have a much higher percentage of regretting patients than gender reassignment, etc.

And even among those (relatively few) who do regret gender reassignment, a substantial number say, in surveys, that social anti-trans pressures play a large part in their regret.

There's TONS of scaremongering around gender reassignment, TONS of people who want you to believe that a powerful trans lobby pushes people into having treatments not truly in their best interest. But this IS scaremongering.

Yes, we should strive for a sensitive and person-centered trans care, to push down the numbers of regrets as far as possible. But a small number of regrets can't be a reason not to offer treatments in the first place. Also, it can't be a reason to make treatment SUPER HARD to access either. If people must jump through a million hoops to get it, we likely INCREASE the risk of regrets rather than decrease it - sunk cost fallacy will make it extremely difficult to back pedal later in the process, for people who already had to fight like mad to get access.

Expand full comment
May 21Liked by Awais Aftab

Sofia, yours is such an insightful comment. My transgender daughter with a diagnosis of schizophrenia, who has not even begun any treatment for gender dysphoria, is clearly much happier identifying as a woman and dressing accordingly. Her personal hygiene is much better, too. When I think back to her childhood interests in cooking, clothing, and Nancy Drew books instead of the Hardy Boys these seem like early signs to me of stereotypical female interests. It is possible that her gender dysphoria is related to her psychosis, but that seems unlikely. I do not know if she will ever be considered an appropriate candidate for surgery. But I think she will undergo hormone treatments.

Expand full comment

Thanks.

Yeah, everyone is different and it's really important not to try to stick everyone in the same mold.

In Sweden, trans care used to be quite inflexible. Trans women had to be stereotypically feminine and trans men stereotypically masculine to get diagnosed and get access to medical treatments, and once you'd finally jumped through all those hoops and were in the system, there was a strong pressure on people to do ALL the treatments available whether they wanted to or not. Eventually, the latter began to ease up, but lots of practitioners still had very gender stereotypical ideas. People would learn to navigate the system and play-act being more traditionally feminine/masculine than they actually were when meeting health care staff. But it's getting better in this area too.

Expand full comment
May 14Liked by Awais Aftab

Bravo! It's interesting that the topic of diagnosis in psychiatry would be so rich, when it would be much less interesting to debate the merit of diagnosing diabetes or hypertension. Certainly psychiatric diagnosis has less internal consistency and probably validity, but in our field we are also talking about valuations which are inseparable from the self. I think that psychiatric diagnosis is neither good nor bad, but that it has meaning for both the patient and the clinician. As patients, we want validation of our suffering; as clinicians, we want justification for the tools we possess and credentials we have earned. Patient and clinician can collude (or cooperate) in a diagnosis and treatment project, provided things go well. Or, they can be at odds: either the patient can desire a diagnosis the dr is reluctant to give, or the dr may wish to impose a diagnosis the patient is reluctant to accept.

I think the comment about the market demanding diagnosis is apt: in recent years there seems to be an increased appetite for diagnosis.

Rachel Aviv's book, "Strangers to Ourselves," also touches on the bi-directionality of psychiatric diagnosis- i.e., diagnosis as a self-fulfilling prophesy.

Excellent piece!!

Expand full comment

Love Strangers to Ourselves.

Expand full comment

Such a thoughtful, interesting piece! I particularly liked "At times I find myself trying to explain dimensions and feedback loops to patients. I talk about symptom patterns existing in the context of personality structure, childhood trauma, and life stressors." If only all psychologists could understand mental conditions this way.

It seems to me that a large proportion of psychologists ignore the fact that--as I read recently--"Childhood maltreatment as a whole has a tremendous impact on mental health: it’s estimated that about a third of all adult mental illness and half of all childhood mental illness is related to it." But perhaps it's changing.

Expand full comment
May 21Liked by Awais Aftab

I agree with others about this being a great read. I will share it with my wife, and perhaps even with my daughter. I particularly liked these words: "In the clinic, I often find myself explaining to my patients why they shouldn’t take the exact diagnosis I am giving them too seriously. These problems are too fuzzy, too fluid, too pervasive, too dynamic." My respect increases for clinicians who acknowledge these uncertainties.

Expand full comment

Insightful essay, thanks for writing.

Expand full comment

Great post as always! So much that I can relate to here, particularly about medication. I am unfortunately someone who has reacted badly to many medications and I now have very little tolerance to waiting for side effects to go away as the fear that they won't go away is too strong (which is obviously also a symptom of anxiety). I've had my quality of life reduced for months at a time because of side effects of getting on medications that I ultimately couldn't tolerate or didn't work and the same getting off them, It's a huge problem! I've written about it on my own Substack as well.

Expand full comment