Do you happen to be familiar with Scott's pre-ACX writing, or... anything else about him?
He has, at least for significant stretches of his life, lived in San Francisco- a location with a much higher than average rate of trans people. He's involved in the rationalist and EA communities- likewise, communities with much higher than average rate of trans people. He has dated at least one trans person. One of his most famous essays (https://slatestarcodex.com/2014/11/21/the-categories-were-made-for-man-not-man-for-the-categories/) is to convince a bunch of nerds that they should be more accepting of trans people.
None of those things preclude him from being *wrong*, of course, but he's hardly forming "wild hypotheses based on pure speculation."
Sorry, I was directing this towards the comment section, not towards Scott. 100% a bad habit I picked up from other social media sites. Sorry for the confusion!
I've talked to about twenty trans patients, ten trans friends, and the trans partner I dated for several years. What else do you think I should know?
That is - if you were to ask me why I'm straight, I don't think I could, from personal experience alone, give a useful answer like "Well, clearly it's about 40% genetic and 60% non-shared environment, and even with exactly the same genes I might have been attracted to young boys in ancient Sparta" - going off pure personal experience I would probably say something like "Women seem pretty." To get the useful answer I need to know things about science/history/anthropology. Why do you think your gender situation works differently?
Oh! I see the confusion. Sorry, I was directing the comment at this comment section, not at you. That's 100% my bad and a bad habit I got from other social media sites like reddit. Sorry for the confusion, I really liked this post.
But I do think it's different with my gender situation because people aren't culturally expected to be trans. Like, if a man is attracted to men before they know gay people exist, then that's evidence it's at least partially biological, right?
It's some evidence, but even then it's not clear - it could be the sort of thing that is an unexpected byproduct of some cultural influence. I've heard that studies conducted in the middle of the 20th century found that most people said they dream in black-and-white but recent studies found that most people said they dream in color. The explanation I've heard is that the cultural influence of television was affecting how people describe their dreams to researchers, even if they hadn't heard of a cultural trope of how dreams are supposed to look. Conceivably, even a culture that has no discussion of same-sex sexual attraction might have cultural products that frequently produce same-sex sexual attraction in some people, which another culture might lack, so that same-sex sexual attraction could conceivably be entirely driven by culture. (Though I do suspect that there are some biological components as well.)
(Looking at the title I first assumed it would be Russian propaganda, heh.)
The article says that married men and women in those tribes keep having (heterosexual) sex all the time, leaving them no time to even think about masturbation or homosexuality. But what about the rest: teenagers, widows, generally people who do not have a partner at given moment?
Here's what I find remarkable -- if you check wikipedia's History of Homosexuality article https://en.wikipedia.org/wiki/History_of_homosexuality then there's an astonishing blank between "Antiquity" and "Early modernity". There's a couple of paragraphs but it's mostly just a list of evidence-free insinuations that hey, someone famous must have been gay.
Given that homosexuality would have been harshly punished in this period, where are the records of it? Where are all the beheadings? It can't have been that they were _that_ good at not getting caught for fifteen centuries in a row. Even the Spanish Inquisition, which charged 500 people for sodomy, only alleged a handful of cases of _homosexual_ sodomy.
Punishment was also directed toward men. Female homosexuality was something barely acknowledged as possible. Of course, conceiving it in terms of "orientation" rather than behavior is also relatively recent.
~40 years ago, used to have a house mate who worked in William Dements sleep lab around its start at Stanford. Told him of my noticing sometimes dreaming in color and sometimes in B&W. He said Dements' lab had determined that color vs B&W was related to remembering and depth of sleep... lighter sleep led to remembering color dreams while deeper only B&W. Interestingly, the color dreaming nights were correlated to my taking Sudafed before bed (before learning of Sudafed sleep impact). Stopped nighttime Sudafed, stopped remembering color dreams.
My family was not well off, so I first saw a color TV when I was in high school. My entier youth was spent with black-and-white TV (albeit not much of it). I can recall no difference whatsoever in the nature of color in my dreams between youth and young adulthood, nor imagine any difference in how I would describe them.
Counter anecdote: when I was a kid I read a lot of books and rarely watched TV. For a number of years, I recalled my dreams as text descriptions of the events, rather than as sensory input directly
Counter-counter anecdote: I read a lot of books as a kid; my remembrance of dreams comes and as far as I can remember has always come in mainly two categories: vivid sensations (associated with the feeling of vividness), immersive situations where I mostly will the dream into existence around me; and unstructured sparse sensations relating to my previous-day concerns (e.g. flashes of gameplay moments from a video game I played with intense focus very late).
Sorry, my mistake, guess I'm feeling too fighty today.
"Culturally expected" is a complicated term - I think the culture-bound-syndrome perspective is that cultural expectations go from "nobody's ever heard of or considered it" (eg transgender in Arabia 100 years ago), "people have heard of it and know it's a think that happens 1% of the time" (eg transgender in US today), "people have heard of it and know it's pretty common" (eg following cis gender roles today), and "people don't even realize they've heard of it because it's just considered the universal obvious thing (being cis in Arabia 100 years ago). I don't think *anything* is at the far extremes of cultural expectation in modern America, except maybe things like "not being object-sexual".
Lots of people have sex with inanimate objects, that usually just gets lumped together with masturbation. There was a mainstream movie more than twenty years ago: https://www.imdb.com/title/tt0163651/
I think calling people fantasizing about being a girl “gender dysphoria” is an example of a culture-bound effect.
For example (all details changed on account of “that’s private”), I might fantasize about having wings and flying around the clouds. But calling that “dismorphia” or “body dysphoria” says more about how others see my fantasizing than it says about how I feel about it. I have exactly zero trauma about not having wings, but if people would fuss about how sad I must be about my misshapen, wingless body, especially during my childhood, I might.
M Scott Peck, the psychologist who I associate most with runnaway bestsellers (with his book iThe Road Less Traveled from the 1980's) went on to write another book called People of the Lie in which he discusses human evil, and in one chapter actually describes cases of what seemed to him to be demonic possession. As I recall, he puts them forward pretty much straightforwardly. My sense is that there are therapists who encounter these kinds of things and say something like, Yup, More things in Heaven and Earth than are dreamt of in our training programs.
My guess would be that "hard-to-resist impulses to do bizarre/bad/uncharacteristic things" has a large biological component, and "what you attribute the impulses to" is approximately 100% cultural
"Gender dysphoria shares some resemblance to culture-bound illnesses; I would put it around the same level as anorexia."
I agree with this, but I think, given the physical and emotional cost of dysphoria and associated treatment, this implies we should try to *turn the culture knob down* so that we're not steering more people into dysphoria.
In practice, I think this is one of the strongest case for *not* doing awareness campaigns, especially for young kids. Encouraging little kids, to cultivate sensitivity to sensitivity seems like it has the potential to elevate a number of manageable discomforts to dysphoria.
Yep! I don't think I'm as worried about the spot the "therapy talk dial" is turned to, which is the other very strong awareness/sensitivity campaign. But that might be because one stream of therapy talk is more CBT focused, and thus more skeptical of reifying your passing feelings while the trauma stream is more about introspecting on your feelings and asking "Is this a deep wound that I will struggle to heal?"
I like the Eastern Orthodox framing of some intrusive thoughts/feelings as logismoi, which you don't *need* to incorporate strongly into your sense of self. You can note them, and then choose whether to embrace them or just wave them off.
Whoa! Scott! I think you should be really precise about what you mean here and not vaguely gesture towards endorsing 'unawareness campaigns' for gender dysphoria.
I want to say this without accusing you of transphobia because I don't think you are, or saying you have to be responsible for all readings of your text. But you are basically endorsing the strategic logic of the conservative "anti-groomer" movement. If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal. Heck your theoretical mental health unawareness campaigns involve book burning and cancellations, what would that mean for existing trans adults or the percent of people who will continue to be trans post unawareness campaign? I'm not sure you can do a sort of clinical anti-gender dysphoria awareness campaign without empowering a lot of people who are transphobic and homophobic.
1) I don't think Scott was seriously suggesting a response that extreme, just hypothesizing about a culture as obsessed with "unawareness" campaigns as ours is with awareness campaigns.
2) If (IF!) gender dysphoria is more culture-bound than not, we've got much bigger problems right now than the consequences of possibly empowering transphobes.
>1) I don't think Scott was seriously suggesting a response that extreme, just hypothesizing about a culture as obsessed with "unawareness" campaigns as ours is with awareness campaigns.
And that's fine, but he should be careful about how he talks about it.
Counterpoint: No, he should not be (especially) careful about how he talks about it, because the worldview that says trans stuff is *special* and should be talked about more carefully than suicide or abortion or elections or gangrene is wrong. Lots of things affect people, and we don’t create special rules around how they can be discussed, nor should we.
A basic attempt to be correct and to say what you mean is all that is required.
Suicide and abortion and elections should all be talked about carefully. Gangrene doesn't have the same political connotations. It can be talked about casually.
I'm not saying trans people are special: I'm saying that when people misinterpret well-intentioned comments about trans people it can have disastrous consequences.
About being careful about how he talks about it: I get it, about the dangers of saying things that can be empowering to the transphobes. But I think it's almost always a mistake to keep quiet about your own perceptions and views because they can be weaponized by the wrong side. If the wrong side does pick up on what you said and try to use it, then you have a responsibility to say loudly and often that that is *not* what you meant, and clarify what you did mean. And anyhow, there's already plenty of stuff floating around in the media and cultural soup that can be weaponized, most of which will yield juicier sound bites than Scott's smart little essay.
It's destructive for people with authority to say what they think will make people do what they should, rather than tell to truth an exhort people to do what they should. That's herding, not informing and advising, and people eventually sense what you're up to and began to hate and distrust you. Think about the way the government initially talked about masks -- "No you don't need them" -- because they were concerned about medical staff not having enough. They should have said, yes, masks keep you safer. We are going to transfer most of the supply to medical staff and other essential workers who need it most, so they will be hard to find. Until we can get more on the market, here are some ways to improvise a mask that are better than nothing.
> If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal.
I don't consider myself to be transphobic. Perhaps in the future we will be able to seamlessly transition or alter our bodies without risk or side effects, but until we reach that point I think it is obvious that people who attempt to medically transition are going to endure a very difficult experience.
Modern culture has far too much faith in the medical system. They are better than nothing, but every procedure has enduring costs. I've had a several surgeries and every one has left me with reduced mobility in the joint and nerve damage.
It feels like there's a false choice in the statement "If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal." I think there's a difference between fearing your child will identify as trans vs. fearing your child will become a permanent medical patient from a medical establishment that barely understands what it's doing when it comes to medical care surrounding trans-related questions.
Take 'puberty blockers' as an example. You can't 'pause' puberty any more than you can 'pause' aging. What you can do is SKIP puberty and sexual maturation by messing up endocrine signaling in ways you don't understand. I've heard that some of the kids who get treated never go through puberty and later in life are unable to experience sexual pleasure.
Should an 11-yo be making the decision to take sex off the table for the rest of their life? If they're trans, but got puberty blockers and never developed sexually, maybe they have a bit less dysphoria about their body but they have a lot of anxiety about having mature adult relationships because they never fully sexually developed and therefore can't connect on a pivotal aspect of most relationships. Is it really a decision between that and certain death for large numbers of kids? Call me skeptical, until I see a good meta-analysis of multiple RCTs, with long-term follow-up.
Years ago I read Ending Medical Reversal, www.amazon.com/dp/1421429047/ and a lot of what I hear described sounds like it's ripe for later medical reversal: panics about 'doing something', talk of how the something they're doing 'makes sense' logically, review from medical patients that they're happy with the immediate results of the treatments as justification for treatment efficacy, absence of RCTs and long-term follow-up, medical practice preceding the accumulation of scientific evidence.
I think it's fair to be concerned that your child's treatment will later be realized as a major medical error without linking that concern to their future gender identity.
Yes, that's a different thing. It's possible to say that you will love and accept your child whatever their gender identity but that you are concerned they will be misdiagnosed with gender dysphoria.
However, if you think having gender dysphoria and treating it through gender transition is a really bad life outcome (for many of the reasons you raise about medicalization), and that gender dysphoria is a cultural contagion. The logic of trying to prevent that cultural contagion by limiting trans visibility is hard to resist.
Probably because there's some interaction among the issues at question:
1. Is the incidence of (for lack of a better term) 'transient' gender dysphoria increased by cultural contagion?
2. Do current medical interventions cause long-term/permanent harm to those who eventually detransition/desist?
3. Do current medical interventions cause long-term/permanent harm to those whose trans identity persists?
4. Do cultural attitudes interact with medical decision-making in a way that biases transition and medical interventions with long-term/permanent consequences?
5. What's the ratio of 'transient'/persistent trans identification and medicalization?
If you think, "currently available medical interventions for a 13 yo trans kid generally lead to bad long-term outcomes," you may want the kid to be able to come out and express their gender identity, but still be concerned that this will lead to harmful long-term medical exposure. In that case, you'd want to be an outspoken critic of the current medical system, but encouraging of cultural attitudes.
If you think a majority of those who get medical interventions will likely desist/detransition, you might be opposed to both the medicalization of trans and the cultural attitudes. I'm not sure how to frame this so as to make it less of a false choice, since it doesn't seem we can have a nuanced discussion of the subject. For a lot of issues, it feels like you're either "pro-[whatever]" or you're "[whatever]-phobic/-ist". Sometimes it feels unpopular to be "pro-'I don't have a dog in this fight, but I'd like to take our time gathering evidence for the open questions in this field before making large-scale societal changes, especially those that have potential long-term medical impacts'".
> The logic of trying to prevent that cultural contagion by limiting trans visibility is hard to resist.
I'm not clear on why it should be resisted, in principle. If the causes of gender dysphoria are partly cultural, then anti-awareness campaigns would merely prevent that fraction of the population from developing it for cultural reasons, leaving only the biologically driven gender dysphoric people to receive the prolonged, uncomfortable surgical treatments they need. As long as there's no stigma associated with this condition, what is the problem with this outcome?
You are making a lot of leaps here. I dont see anywhere that supports that Scott "think[s] one of the worst possible life outcomes for your child is that they become trans". I also don't see this echoing any of the "anti-groomer" talking points. In the review of Crazy Like Us, Scott writes, in the Unawareness universe "Secretly the psychiatrists will still treat anybody who comes to them, they’ll just make them swear an oath of secrecy first." So he is clearly not advocating that people should receive treatment. He is only wondering what it would be like if culture didn't promote certain conditions. Thats very very far from the anti-groomer bigotry that casts LGBTQ people as pedophiles and defectives.
No, I think this is hugely loaded and we should be really careful about it. I'm not at all blaming Scott for what the anti-groomer movement does But, if you're suggesting gender dysphoria is largely a cultural contagion, and that maybe we should act to reduce awareness of that cultural contagion, the behavior of the actual movement operating on your theory seems relevant.
Receiving treatment while swearing an oath of secrecy doesn't resolve the problem of trans people being visible in society, not everyone is going to pass and people are going to ask, what happened there?
This strikes me as similar logic to “if you’re questioning biblical science, and the other people questioning biblical science are witches, maybe you should shut up.”
No, in fact, he shouldn’t. He should say what he believes is true rather than being cowed into silence by an argument founded on guilt-by-association. If you have an argument against what he thinks is true, make it; but if all you have to offer is tone policing, your contribution has negative value.
"I'm not sure you can do a sort of clinical anti-gender dysphoria awareness campaign without empowering a lot of people who are transphobic and homophobic."
Interestingly, this doesn't make it a bad idea. Imagine if we could erase anorexia by running an unawareness campaign, but also it would empower the Healthy At Any Size people who say it's perfectly normal to weigh five hundred pounds and die of a heart attack at 40. Would this be bad? Well it depends how many anorexics we avert vs how many morbidly obese people we create. It's not enough to gesture at some possible side effect, you have to actually run the cost-benefit numbers!
>If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal.
I think the trans activists seem to spend a lot of time convincing everyone that absolutely one of the worst things that can happen to people is be trans. They talk incessantly about suicide and abuse and what a struggle it is.
"If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal."
But I do think becoming trans is one of the worst possible life outcomes for my child. Their suicide rates are sky high. I didn't get that from anti-groomer conservatives; I got it from trans activists.
Scott, I'm a fan of your work, but I'd be a little less casual about saying stuff like this. What would a "gender dysphoria unawareness campaign" look like in reality?
I understand you're not saying this out of malice, and I'm not saying you're necessarily wrong, but I think it's important to be careful about how talk about it.
Do you think gender dysphoria awareness advocates should be less casual and more careful as well, are you certain they are all incredibly careful to ensure that each word is chosen with the utmost concern, or do you think that their failure modes are less significant than Scott's?
In the Crazy Like Us review, Scott writes "Secretly the psychiatrists will still treat anybody who comes to them, they’ll just make them swear an oath of secrecy first." So in a world with a "gender dysphoria unawareness campaign" people still get the treatment they ask for.
This was just a quick speculation on Scott's part. I don't see him actually proposing unawareness campaigns as a solution to anything. In fact he concludes "I’m not sure if this culture would have more or less mental illness than our own." So he's not even sure it would work!
As the old saw goes, we’re in a hole, the first step is just to stop digging.
So, for starters, we should relax existing awareness campaigns. Take gender ideology out of middle and high school curricula, stop doing events to raise awareness aimed at young kids—like, say, the “drag queen story hours” that became a culture war flashpoint in the past. (Hopefully admitting that the right was correct about them won’t wound your ego too much.) The movement should probably rebrand away from “protect trans kids”. We can understand that the people leading all of those efforts were well-intentioned and sincere, but also recognize that as it so happens the harm outweighs the benefit, and it’s time to put down the signs and go home.
Finally—what should Scott have really put differently here? His tone strikes me as incredibly careful and well-couched with caveats. To go out on a limb, I don’t think the tone here is your problem at all; rather, it seems like you are very uncomfortable with the implications of his ideas, but unable to present an argument against them, and defaulting to criticizing his tone instead. Consider that the truth might be uncomfortable, and you might have been wrong in the past, and don’t shoot the messenger.
Exactly. The only thing we know for sure at this point is that transsexuality and homosexuality are a behaviour. The rest is speculation. First and foremost, all people who practice any kind of behaviour which does not obviously harm others should be treated with respect. That being said, parents are well within their right to encourage or discourage in their children any kind of (non-harmful) behaviour they wish and here is where we have the problem. Certain movements are working to promote "awareness" of certain behaviours in public schools to other people's children. Imagine if someone suggested that we have should be having Catholic storybook hour in public schools which taught kids that bread can turn into flesh and wine into blood? (something which is not much more fantastical than that a man can turn into a woman)... I think all of us need to learn to be content with having our non-harmful behaviours respected and tolerated by society, but not expect that our behaviours should become part of the public school curriculum...
I disagree with the extension of this logic to sexual orientation. It strikes me as less culture-bound than gender dysphoria—even if, as Scott points out, everything is at least a bit. Also, life outcomes for people who are gay—in terms of e.g. suicide rates or lifetime earnings—are far better for people of nonstandard sexuality than people of nonstandard gender. Differences like these make me think that gender and sexuality are different phenomena to investigate separately. The best approach in one case may not work for the other.
For all that gender is useful to us in terms of giving us a pre-assembled toolkit for identity construction and understanding social roles, it is awfully constrictive and oppressive. Many people are not able to find satisfactory ways to self actualize within the confines it sets, and there are considerable social costs to working outside the boundaries. These discussions about gender ideology are helping to break down those boundaries, to expand the Overton window of gender identity, to work towards a future where everyone is a little bit more free to manifest their individuality.
Moreover, "but think of the children" is a rallying cry that has been used to censor, oppress, and enact very real harms onto queer people and queer communities for a very, very long time and I absolutely will shoot the messenger who starts crowing about that.
Fine, but teach that ideology to YOUR children. Not to mine. I absolutely will shoot messengers who start crowing to my children that they are free to be "shes", "hes" or in betweens because gender is subjective. Biological sex is the only objective truth and the one which should be being exclusively taught in public schools to our children. The rest is ideology and can be taught in the home.
Rather than reducing discussion of gender dysphoria, depression, anorexia etc. to reduce social contagion, could the exact opposite approach work? Public education about how social contagion works and how many popular culture-bound illnesses appear to have a strong social contagion component, as a prophylactic.
I'd really love to see a longitudinal study that showed some children cartoons simply explaining these disorders, and how often they are "just in your head" and that if you don't think you'll get them, you won't, and seeing if these children ended up developing less of these culture-bound illnesses. Beyond the internet culture war argument implications, if this turned out to be an ultra-low cost method to reduce prevalence of depression and anorexia it would be incredibly valuable.
"Oh my God! I just heard about this new mental disorder! And it's well known from social contagion theory that people who hear about new mental disorders are disproportionately likely to acquire those disorders! I'm doomed!"
--Not sarcastic. That's exactly how I predict that would go.
A friend remembered hearing about the dangers of lead paint in the late 70's, but as a kid, that just meant "WHAT? YOU CAN EAT PAINT CHIPS? NEATO, LET"S TRY IT"
It's one level up from that. Jacob is recommending that we expose people to a selection of compelling mind-viruses, and that we pair these with the message: "mind-viruses like these tend to stick in your brain and destroy your life".
Imagine if upon entering med school the students were told: "If you start to think you have a disorder, this wildly increases the chances that you will in fact catch it!" To put it mildly, I do not expect this to decrease medical student syndrome.
By the same token, I do not expect Jacob's recommendation to diminish the spread of mind-viruses.
What if we start telling people that hearing about a disease makes you less likely to think you have it? Call it pathological anpathognosia or something to make it sound really impressive!
That would make for a good novel. A secret organisation dedicated to stamping out knowledge of a religion just to guarantee that the shield of ignorance remains.
I think I'm sympathetic to "telling people gender dysphoria exists is sort of an infohazard if you're not letting them transition, net positive if you are?"
although given how slow our culture is about this this is an argument against telling kids/teens about gender dysphoria
That implies the transition itself is healthy, when it seems distinctly unhealthy due to the lifelong hormone treatments and highly invasive surgeries, which often result in the patient becoming sterile.
Why would you think of it as net positive to be allowed to transition, such that sharing the infohazard itself becomes net positive?
The assumption is that if the transition improves quality of life, then it is healthy. A bit like any psychiatric treatment (anti-psychotic drugs.....).
Right, I get that. Alex seems to be indicating that the "infohazard" part is good if you allow people to transition. I see an infohazard as separate from people who may have "naturally" been trans and were already seeking treatment. The infohazard sounds bad all the way around. Alex's follow up response indicates that they see it as something like "someone may not know they are trans, so allowing that knowledge to exist in general society can provide a path to seeking treatment that would not exist otherwise." I can see the benefit of that, though it's very difficult to weigh that against the problem of an infohazard *causing* orders-of-magnitude more people to believe they are trans and therefore having all of the difficulties that "naturally" trans people have.
So what's your solution? To censor trans people from speaking about their experiences and fighting for their civil rights? To punish them, their friends, and their families if they try to work towards a society more accepting of them?
Go ahead and say the quiet part out loud, Mr. Doolittle.
Assuming that people are either trans or not, what if the full realization of their gender dysphoria actually creates more suffering than the transition can alleviate? Maybe they could have lived their whole lives with a vague discomfort and the occasional thoughts of "Might be nice to be the opposite gender", but when it really hits them, they now experience the stress from knowing exactly what they are dissatisfied about, being misgendered, and wondering if anyone will accept them if they transition. I don't doubt that transition improves quality of life for people who are already suffering from gender dysphoria but it's questionable that it would necessarily improve it for those who *may* experience it but remain blissfully unaware in the mean time.
I can only speak for myself, but as someone who plausibly is trans because of social contagion (was part of a friend group where ~80% of us came out as some flavor of trans over about a 5-year period), I genuinely think my quality of life is as good or better than it would have been otherwise. Being my AGAB has been socially and to a lesser extent physically uncomfortable for as long as I can remember. Drawing attention to that dysphoria was uncomfortable for a few years, but between hormones and not being a teenager anymore, I am literally the most comfortable with my body that I've ever been. Was it the only solution to my problems? Maybe not. Is it better for me than an eating disorder or doing a lot of cocaine? Definitely yes.
I've identified as trans for pretty close to exactly 9 years now. Can't speak to how I'll feel in 9 more, but at the moment I wouldn't change anything about my situation.
I'm glad your life has improved and I hope your experience is typical, but I do find it interesting that you mention 'not being a teenager anymore' because I think that's an important factor in many people's life satisfaction, including my own.
Transition probably improves quality of life over untreated gender dysphoria, but still results in a substantially lower quality of life over not having gender dysphoria, really, not even a little bit, because you never heard of it the way people in pre-1994 Hong Kong never heard of anorexia.
If so, and if gender dysphoria is mostly culture-bound, then knowledge of gender dysphoria is indeed an infohazard that will on average reduce quality of life. Just not as much as it would if we talked a lot about gender dysphoria but didn't allow treatment.
Caveat 1: At present, there is a fairly large support community for transgender individuals; rather less so for other mental illnesses. So it is possible that transition results in a net improvement over quality of life over "I never heard of gender dysphoria, but my depression really sucks and nobody seems to care", because it gains access to that support community.
Caveat 2: All bets are off if we manage to both create a fully tolerant society with no transphobia, and also develop the medical technology for *complete* gender transition, including normal fertility in one's new gender and ideally fully reversible.
> Transition probably improves quality of life over untreated gender dysphoria
Have we done any actual studies on this, though, or are we just guessing?
If we're just guessing, then my guess is that untreated gender dysphoria is usually transient, and that treating it is worse.
And if that's not the case overall, then I think it's probably the case at least for younger and newer cases of gender dysphoria. Starting a kid on the path towards "transitioning" the moment they express a vague wish that they were born the opposite sex is going to ruin the lives of many kids who would otherwise have gotten over this phase on their own.
There have been a number of studies on this, yes, and the numbers for people diagnosed with gender dysphoria who don't get treatment are appallingly bad (double digit suicide rates), while the numbers for post-transition people are significantly worse than for cis people but much less bad.
Of course, every study in this field (as in many fields) is done by a group with strong pre-existing opinions on the issue, so detractors will frequently claim bias - I don't know nearly enough to judge those kinds of claims
Aside from formal health systems, which are vast if under resourced, there are large support networks for a variety of mental illnesses. I'm not sure where you are, but I could probably put you in touch with a local NAMI support group for any number of mental health concerns relatively rapidly.
From my understanding of the OP, culture bound syndromes are caused by the brain noticing various symptoms, and then fitting them into a "narrative" or "theory" that is present in a culture. This then creates a "spiral" effect where they start to notice more and more stuff that fits the theory, exacerbating the illness.
Applying this to gender dysphoria, we have someone who has vague feelings of depression and unhappiness about their life and dysphoria about their body. Because it is available in the memosphere, they lump all these symptoms together into gender dysphoria, and then notice more stuff to be dysphoric about. Then they transition and all the dysphoria goes away or is significantly lessened.
I think where you are coming from is that you are assuming that since those "original" vague feelings of depression and dysphoria were not caused by gender, a gender transition won't fix them. Maybe that's true, but maybe not. Brains are weird. Maybe somehow lumping the "original" symptoms into the gender dysphoria narrative will result in them getting "fixed" by transition. The end result might be someone who is happier on the net.
If this is the case, someone who underwent hormone treatments and surgeries might be happier then someone who never had gender dysphoria, but did have the "original" symptoms that brains sometimes lump together into dysphoria. I don't know, it's highly speculative but most of this field is.
Well or you could just tell them they will be fine in 2 years when they get out of puberty. Or you could give them sugar pills for 2 years. Both of which would probably lead to better total life outcomes (I would bet IDK millions of dollars on this).
Given human history, in an evolutionary aspect, it seems pretty likely that most people want kids. Some people are abhorred by the ideal, just as some people do not like the taste of meat. But mostly veganism is a social thing, not inate.
I'm not convinced most people want kids. I think most people want sex and are willing to raise children if they have them. That would be enough for evolution, which could hardly anticipate the existence of birth control.
"Willing" to rear children is utterly insufficient to the magnitude of the task of parenting. You have to be deeply devoted to the concept of your children, as well as to the individual children involved, to succeed at the job. Your theory would only work for fruitflies or otters, some species that relies on sheer fecundity, and in which the parental investment is relatively modest, rather than a species like ours, which relies on extraordinarily high parental investment -- we routinely spend 45% of our adult working lifespan (~20 of 45 years) looking after our children.
People don't need to be driven towards procreation to be driven towards behavior that tends to cause procreation in a state of nature. Before you come up with evolutionary just-so stories, you have to notice around you there are plenty of people who either do not want children or want significant control over when and how many they have, with the preference being much lower than their total potential. Evolution self-evidently produces creatures with those desires. This is a fact evolution must accommodate, and if your intuitions about what evolution via natural selection must result in contradict that, that's a sign your intuitions are wrong.
That's a terrible argument. The exception does not prove the rule, biologically speaking. That some people get cancer as children does not prove that there is some adaptivity to childhood cancer. It is (one assumes) an unfortunate side-effect of some other mechanism that is adaptive. Similarly, the existence of a minority of individuals who have zero desire to procreate says jack about what evolution may or may not have built into the generic individual in this respect, so it need no better explanation than "shit happens," and natural selection is hardly a universal amd perfect optimizer.
It’s a net positive for the people who have the sort of gender dysphoria that can only be successfully addressed by transition, and otherwise would have been unaware that this was an option.
It’s a net negative for the people who never would have considered transitioning otherwise and would have found some other less invasive means of addressing whatever symptoms made them susceptible to the “gender dysphoria infohazard”. E.g. upper half of the Kinsey scale female adolescents with typical puberty related body image discomfort.
The balance between these two groups is culturally modulated, but in American culture 2023, I suspect there are more of the latter than the former.
-going through puberty and having a sexuality that was not remotely functional and being vaguely dissociated from this and also generally feeling meh
-hearing that gender dysphoria was a thing and as a result of this getting more ~classic dyphoria symptoms and feeling like 'oh fuck I can't live like this"
Having dysfunctional sexuality going through puberty and feeling vaguely dissociated from that is incredibly common in all sorts of people, and something that often gets resolved with time.
Why are you so sure that the counterfactual to receiving classic dysphoria symptoms through contagion is that you live with sexual dysfunction forever rather than growing out of it?
For what it's worth, I've seen transitioning make people I know conspicuously happier for years. It could just be suggestion, but it may be something they really needed.
I've also seen a fair amount from people who said they knew something was wrong, and it took them a long time to find out it was gender dysphoria.
And I've seen interviews with people who detransitioned. (Benjamin Boyce was doing these. I don't know whether he still is.) It's apparently possible for people to be miserable and jump to the conclusion that it might be gender dysphoria when the cause might be something else.
If they're at the point that transition is plausibly the best option, then sure, go ahead. But if the whole dysphoria thing could've been avoided altogether it's a different conversation.
I don't see that dysphoria can be avoided in general, though I agree it also shouldn't be amplified.
If I were running the world, I'd give everyone a year where no one around them cared whether they transitioned or not, just so they can settle their nerves and know what they actually want. This is not feasible.
But wasn't it the whole point of Scott's post? It seems plausible that in not-overdetermined (by hormone imbalance and the like) cases social contagion plays the decisive role, by initiating some kind of feedback loop, which breaks free from normal variance that people ordinarily "grow out of".
"It's apparently possible for people to be miserable and jump to the conclusion that it might be gender dysphoria when the cause might be something else."
Considering that the "something else" might be a condition that really is made worse by one's natal sex, I wonder how much jumping need be involved.
Ehlers-Danlos Syndrome (EDS), a collagen abnormality, provides an instructive example. People with EDS have weaker connective tissues, which keep kicking up their immune system by breaking more, and which can cause some embarrassing cosmetic problems, problems others might have after massive weight loss, only with EDS, you don't have to gain the weight in the first place to have them.
The closest thing to a "cure" for EDS might be androgens. That is, androgens partly compensate for connective-tissue weakness. Androgens help build muscle mass that protect against joint injury, they thicken skin, and so on. Men can suffer from EDS terribly, but overall, the population of men with EDS traits is affected less badly than the population of women. Add in that female fertility is pro-inflammatory, and maybe it's not surprising that the incidence of EDS diagnosis among patients at one gender clinic was measured to be 132 *times* that of the general population (1st reference), with patients with EDS seeking treatment for gender dysphoria being disproportionately born female (89%, 2nd reference), seeking either masculinizing transition or a nonbinary body, with chest masculinization being the most common surgery (58%, 1st reference).
The stereotype is that teen girls' breasts are perky and attractive, that hideously stretch-marked, sagging sacks of flesh are a curse of older womanhood. You don't even have to *want* nice boobs to find growing "granny sacks" instead of "normal breasts" at thelarche embarrassing. The stigma that "granny sacks" are nature's punishment for those who let themselves pork up before slimming down doesn't help. Fat-shaming isn't reserved for the fat to begin with, and appearing formerly-fat is just one more handy excuse for it.
So, EDS can be physically uncomfortable (it isn't always, but it can be), and can make it difficult to conform to notions of what a "normal" body of your sex and youthfulness should look and feel like (not just for women; men with EDS may look and feel "too delicate to be Real Men"). Girls often find the discomfort of EDS worsened by puberty, and the body-horror of puberty dialed up to 11: wishing for a body that's masculinized instead, or to revert to childhood androgyny, seems especially understandable in these circumstances. Add in that androgens can compensate for the underlying defect...
I was diagnosed with EDS in my thirties. I went through female puberty convinced my complaints were either psychosomatic, or a sign that life in general sucks, womanhood sucks, and human sexuality pretty much sucks, too. I was too embarrassed to complain about (what I supposed was really soul-caused) physical suffering to my friends, and too religiously-conservative to transition, but I used to sardonically joke about transitioning. Mightn't God be calling me to transition to manhood and become a monk, some calling that might actually suit me? (Alas, transness is disqualifying for Catholic monastic vows.) I also inferred that the skin signs of EDS were merely evidence that I'd let myself get "fatter than my body could handle", despite not exceeding normal BMI. Maybe a BMI on the high side of normal was just too much for some bodies?... And wasn't "eating too much for your body" gluttony?...
Not "growing out" of "childhood asthma"? Another sign of being "too fat for your body": well-meaning adults reassured me about my asthma in childhood by predicting I'd "grow out of it" (though we now know that's not how asthma works), and everyone knows being a fattie makes asthma worse. Knees already hurt? Not an old lady yet, not an impressive athlete who's "earned" spectacular knee injuries, must just be too fat for your knees! Fatigued? Hey, being fat is tiring! And exactly nobody's surprised when fat girls get painful, heavy periods. Why should a normal BMI rule out being "overweight for you" when other signs of overweight are present? I didn't complain to doctors about my "fat signs", either: I already knew "be thin" was standard advice for such complaints, so why out myself as a delusional whiner?
Since I never got painfully thin, or even model-slim, my guilt never seemed obviously irrational – or even abnormal: teen girls diet. I couldn't manage to abstain from food aggressively enough to achieve typical anorexia, and the horribly-distorted body-image we were taught anorexics have didn't apply to me. I was aware I could count all my ribs, thank you, even as my cellulite dimples remained too numerous to count. Reading through the diagnostic criteria for anorexia as an adult, I went through youthful phases that could have just barely qualified. But not usefully.
My conclusion from all this is that, if going through puberty with EDS induces a desire to transition, the desire is a fairly rational one, and, especially if the EDS goes undiagnosed, transitioning might be the closest thing to symptomatic treatment for EDS that youth – and girls, especially – can convince medical gatekeepers to provide. To jump to the conclusion that transitioning is the solution when "the problem is really EDS" isn't much of a jump. And I have no reason to suppose EDS is unique in this regard. People solve their problems with the tools available to them.
I was thinking of a detransitioner I'd seen interviewed. A substantial part of her apparent gender dysphoria was an eating disorder-- she was hoping that being male would help her lose weight.
"Come, you spirits That tend on mortal thoughts, unsex me here" seems an especially appropriate desire for young women with endometriosis that nobody bothers to check for.
I certainly got the message, growing up, that female fertility was supposed to be uncomfortable, but finding it uncomfortable enough to complain of it, much less be impaired by it, was a sign of wussiness, or of something you must've done (like being too fat) to bring additional discomfort upon yourself. Not surprising that this message might lead young women with unaddressed discomforts they did not bring upon themselves to conclude that womanhood itself was the problem.
I know that's how my ancestresses, half of them who had also asthma, and, according to the genetic counselor, probably EDS as well, thought of it. A female body was kind of a raw deal, but also a raw deal one should pride oneself in enduring without complaint or reduced net productivity.
"The closest thing to a "cure" for EDS might be androgens."
Can you say some more about androgens for EDS. I have an acquaintance who has EDS and is having a terrible time coping with grad school because near the end of her first year into her PHD program she developed chronic fatigue syndrome (exhaustion, malaise, exercise intolerance). She and I have read enough of the literature about Chronic Fatigue Syndrome to know that even the doctors who believe the syndrome is a real thing do not feel optimistic about treatment. Seems there's nothing that helps. So she and I are looking for something evidence-based that's worth trying. Can you send me to any info about androgens helping EDS?
First, even the closest thing to a cure for EDS is still likely to be pretty distant. EDS is managed, not cured, and often, slowing decline of function, not restoring it, is what's feasible. (We're premature geezers!) The best way to "recover" function with EDS is to not lose it in the first place (and some lucky people don't). Secondly, for particular vascular problems, such as in vEDS (vascular EDS), doctors may advise blocking androgens to reduce cardiovascular risk (even if that increases suffering and decreases function: funny how high others rate not-dying over not-suffering).
That said:
Tissue laxity from EDS means joints lack normal protection against hyperextension and injury. Joints' range of motion is too wide for safety. To have EDS is to rely more than others do on muscle to stabilize joints, since other stabilizing tissues aren't much help. Muscle-building therapy helps brace joints from inside out, reducing pain and fatigue. Here's a study on strength training as anabolic EDS therapy:
Exercise intolerance makes physical therapy harder, but usually not impossible. Finding a sweet spot that achieves rehab without triggering the intolerance can be maddening though.
And now, to hormones:
The bulk of research suggesting androgens can protect and strengthen connective tissue isn't done for EDS, but to explain the difference in injury rate between male and female athletes, especially, it seems, for knee injury. Complicating matters, genetically male and genetically female cells don't respond to androgens identically, and sex hormones interact. Transmen might not find androgens as protective against EDS as cismen, but testosterone still reduces range of motion (desirable in EDS) in female Wistar rats (measured with a wee goniometer!):
"I saw a reference on the internet to even low doses of testosterone helping with joint stability- and therefor preventing or slowing joint damage. I brought it up to my doctor tentatively... She agreed readily that this was well known and there were studies to back it up.
"I asked her WHY, in the years she’d been treating me, she NEVER brought this up. She confided that there were Side Effects. I listed the effects I’d seen on my friends who’d been on testosterone for years, and she nodded along. I waited for her to add something more dangerous that might apply to me.
"She had nothing.
"She really believed it was such a sure thing that I would rather have chronic pain and potentially reduced mobility than having a lower voice and some extra hair."
(I would mind if EDS, which has broken so much else, also broke my voice, but then, I sing.)
"Almost exactly 1 year in on low dose testosterone gel and... my pain hasn’t been lower in probably 15 years and I’ve stopped worrying about mobility loss. Every part of my health is improved."
Here's another EDS patient using testosterone shots to enhance physical therapy:
"I have been getting testosterone shots for a couple months now, and I have definitely seen improvements. It has helped me build muscle to support my joints, making physical therapy much more effective."
Some people try to treat EDS with the synthetic anabolic steroids bodybuilders use, apparently sometimes with success, but results seem mixed (some of these steroids apparently damage cartilage, others may not).
EDS can suck you into an overexertion-injury-deconditioning cycle, where attempts to recondition provoke injury that forces even more deconditioning, worsening exercise intolerance. EDS can also monkey with the autonomic system and blood pressure, which may worsen exercise intolerance. Some people find eating extra salt helps with this. Autonomic dysfunction can also – whee! – cause/mimic psychiatric distress:
My heart goes out to your acquaintance. I didn't get an EDS diagnosis (much less pertinent treatment) in time to get my PhD, and, even if I had, could I have managed without having personal assistants (which I couldn't afford) to manage the life stuff so I wouldn't be diverting my limited reserves from academics? (A community that loves you enough to offer assistance gratis, and big enough that members don't burn themselves out from that, would be even better, but realistically, how many grad students get that?) If they don't harm sleep, or worsen underlying dysautonomia, ADHD meds can blunt EDS fatigue, help attend away from EDS discomfort, and generally help anyone be their own manager despite a body that's not cooperating. They're just a band-aid, but sometimes we need band-aids.
Midge, thank you so much for this cornucopia of information! Is there a way I can stay in touch with you in case I have more questions? If you have your ACX responses forwarded to your email, I can just contact you by putting a post here. If not, is there some other way I can reach you? Also, do you know of any good resources on the internet for info about EDS or Chronic Fatigue? A forum like this, populated entirely by smart sensible people would be ideal (but that's a pipe dream I know). Friend would probably be willing to try anything that's evidence-based, but not weird faddish stuff (though of course it's not always possible to separate the wheat from the chaff). Her situation is very difficult: She knew from a young age what she wanted for a career, and is very gifted in the needed skills. Managed to go to a top undergrad program and get into a top grad program -- then a year in began to have chronic fatigue. She is continuing to meet her grad school responsibilities, but has a research advisor who has Asperger's or similar, and truly seems to think of my friend as a very well-built AI who can be trained on the adviser's body of research and thereafter will be quite a useful assistant. Advisor makes appointments with friend, then cancels at last minute or is 90 mins late. Asks friend to do investigate certain obscure ideas, and refuses to have meetings to explain things that are so advanced that even the post-docs in the department do not understand them. I'd like to wring her neck. Meanwhile friend's exercise intolerance is so bad that having to walk 15 mins to a meeting left her exhausted for the whole next day.
I do get ACX responses forwarded to email, and have starred your reply. Hopefully, that means any future replies in this thread won't get lost in my inbox.
Overall, the best online resource for EDS is knowledgeable, patient, and skeptical browsing to trawl for information and see what comes up – DIY research, in other words. Since DIY research competes with academic research for an individual's reserves, friends/family who could help your friend with "presearch" (initial trawling) so she can focus on more wheat, less chaff, and divert less energy away from academics, might help her. The good news is that many with these sorts of chronic illness are bright, sensible people whose bodies have to some degree thwarted their career plans, and so who find research on behalf of someone they've never met welcome mental stimulation. The bad news is that chronic illness can leave people desperate and gullible to quackery, or invested in risky experiments. I've noticed there's a paranoid-but-gullible cognitive style that's particularly attracted to quackery, and understandably common among the chronically ill (who've often been genuinely let down by "the system").
"To respond rapidly to infection or cellular damage, MCs [mast cells] express germline-encoded pattern recognition receptors (PRRs) that recognize unique bacterial, viral, fungal or parasitic components known as pathogen-associated molecular patterns (PAMPs) and host-derived molecules, called damage-associated molecular patterns (DAMPs)" – and the EDS body seems extra-DAMP:
But once the immune system is mobilized, it may not settle down. This reference addresses high-energy trauma, not the accumulation of low-energy traumas common in EDS, but since EDS yields poorer prognosis for tissue recovery, it seems relevant:
"Immune dysfunction is accompanied by a temporal shift in the innate and adaptive immune cells distribution... Recent studies have implicated this dysregulated inflammation in the poor prognosis of polytraumatic injuries"
Mast-cell stabilizers are a fairly popular remedy for EDS-related immune, uh... awkwardness. EDS is not an autoimmune disease, but it's common for EDS bloodwork to read as inconclusive for autoimmunity due to vaguely high inflammatory markers. "Immune derangement" seems the official term for conditions of any sort involving abnormal immune activity.
After that digression, onto other resources:
EDS seems something of a cause célèbre in the UK (at least compared to here), so the NHS's and British charitable trusts' info on EDS tends to be fairly good:
PainScience.com, run by former Science-Based Medicine editor Paul Ingraham, may be the most useful single consumer reference available on pain management and musculoskeletal care. Why do we hurt? How do we make the most of limited resources in seeking relief and rehab? How can we benefit from exercise despite exercise intolerance? (a personal issue for Paul, an athlete who developed exercise intolerance):
Now that I've mentioned ME/CF and advocacy, broaching chronic illness to employers or other gatekeepers (including medical gatekeepers!) takes discretion. If not mentioning it at all, then mysteriously floundering, is causing more disruption than seeking available accommodation would, it's fairer to yourself – and others – to pipe up. But even sympathetic people dislike feeling confused or cozened, and while freeloading off claims to illness seems rarer in fact than in people's imagination, it *is* in most people's imagination, especially regarding "invisible illness":
My strategy is to avoid multiplying labels. When the geneticist diagnosed me with EDS, he added, "And I'll write down you've got fibromyalgia, too."
"No, you will NOT write that down."
"But fibromyalgia is a normal result of EDS."
"Since it's a normal result of EDS, then EDS, not fibromyalgia, is the specific explanation for my problem. I don't want terms famed for vagueness distracting up my chart."
To his credit, he listened. Others with EDS may attach great importance to accumulating labels describing the symptoms of their EDS, but I'm more cynical, especially regarding labels notorious for harming patient credibility:
"For women with non-acute problems and a longer diagnostic journey, the challenge seems to be to hang on to your credibility as a reliable reporter for as long as it takes for the mystery to be unraveled."
"Too many" labels often strike others as incredible. Though so can blaming a bunch of disparate-seeming stuff on one underlying cause. And certain labels invite distrust, whether or not they should.
For example, since both asthma and EDS involve immune abnormality, I'm not surprised weird aftereffects can linger after I've had a cold. If a cold leaves me with slowly-subsiding vestibular neuritis for two years, then "vestibular neuritis" should make my chart, since it's not a common consequence of either EDS or asthma. But, since slowed or incomplete recovery from infection is more generally a common consequence of both, why mention "vestibular neuritis" anywhere off my chart unless dizziness or vertigo first comes up? Even then, "EDS means I don't bounce back quickly from colds. A cold inflamed my inner ear and my balance hasn't recovered yet," is more prosaic and *unifying*, inviting less speculation like, "Last month it was 'EDS', this month it's 'vestibular neuritis'. Always with the excuses, this one. Wonder what medicalized excuse she'll invent next" – though, if I were *inventing* excuses for myself, I hope I'd invent ones less ridiculous than what I've really got! Plus, since the vertigo is nearly gone now, no point in characterizing myself by it. Many would rather not characterize themselves by their permanent conditions, either, but once something interferes with your life enough, it's a characteristic whether or not you admit it.
An old friend of mine ended up switching PhD programs because his PhD advisor disrespected his marriage. The advisor still had the old-fashioned idea that PhD candidates' spouses count only as candidates' support staff, not as human beings who may need support themselves, and remained stubbornly oblivious on this point. Switching was a wrench, but worked out OK for him. I don't know if requesting telemeetings in lieu of unreliably-scheduled walk-in meetings, or a mobility aid for the walks, would work for your friend, but people who *can* walk, just who shouldn't walk *much* for some reason, aren't "cheating" by using motorized aids to get around – and some aids, like electric bikes, wouldn't even "look like cheating". I know an ex-ballerina whose legs are uninjured but who uses a wheelchair now because docs worry else her aorta might explode. The biggest problem with using mobility aids in EDS is ensuring they don't increase deconditioning. (Though, if the alternative is aortic dissection, deconditioning might be the lesser of evils.)
It sounds like "not answering to a flake" might help your friend the most. Though simply *being* chronically ill can invite the judgment that you're pretty flaky yourself, weakening your bargaining position to demand less flakery from others.
To end on a happier note, this is one of those "inspirational young heroes" pieces that name-drops some EDS research centers:
Do you happen to be familiar with Scott's pre-ACX writing, or... anything else about him?
He has, at least for significant stretches of his life, lived in San Francisco- a location with a much higher than average rate of trans people. He's involved in the rationalist and EA communities- likewise, communities with much higher than average rate of trans people. He has dated at least one trans person. One of his most famous essays (https://slatestarcodex.com/2014/11/21/the-categories-were-made-for-man-not-man-for-the-categories/) is to convince a bunch of nerds that they should be more accepting of trans people.
None of those things preclude him from being *wrong*, of course, but he's hardly forming "wild hypotheses based on pure speculation."
Sorry, I was directing this towards the comment section, not towards Scott. 100% a bad habit I picked up from other social media sites. Sorry for the confusion!
I've talked to about twenty trans patients, ten trans friends, and the trans partner I dated for several years. What else do you think I should know?
That is - if you were to ask me why I'm straight, I don't think I could, from personal experience alone, give a useful answer like "Well, clearly it's about 40% genetic and 60% non-shared environment, and even with exactly the same genes I might have been attracted to young boys in ancient Sparta" - going off pure personal experience I would probably say something like "Women seem pretty." To get the useful answer I need to know things about science/history/anthropology. Why do you think your gender situation works differently?
Oh! I see the confusion. Sorry, I was directing the comment at this comment section, not at you. That's 100% my bad and a bad habit I got from other social media sites like reddit. Sorry for the confusion, I really liked this post.
But I do think it's different with my gender situation because people aren't culturally expected to be trans. Like, if a man is attracted to men before they know gay people exist, then that's evidence it's at least partially biological, right?
It's some evidence, but even then it's not clear - it could be the sort of thing that is an unexpected byproduct of some cultural influence. I've heard that studies conducted in the middle of the 20th century found that most people said they dream in black-and-white but recent studies found that most people said they dream in color. The explanation I've heard is that the cultural influence of television was affecting how people describe their dreams to researchers, even if they hadn't heard of a cultural trope of how dreams are supposed to look. Conceivably, even a culture that has no discussion of same-sex sexual attraction might have cultural products that frequently produce same-sex sexual attraction in some people, which another culture might lack, so that same-sex sexual attraction could conceivably be entirely driven by culture. (Though I do suspect that there are some biological components as well.)
but every observed culture has gay people
False:
https://www.theatlantic.com/health/archive/2012/12/where-masturbation-and-homosexuality-do-not-exist/265849/
(Looking at the title I first assumed it would be Russian propaganda, heh.)
The article says that married men and women in those tribes keep having (heterosexual) sex all the time, leaving them no time to even think about masturbation or homosexuality. But what about the rest: teenagers, widows, generally people who do not have a partner at given moment?
I'm not so sure about that.
Here's what I find remarkable -- if you check wikipedia's History of Homosexuality article https://en.wikipedia.org/wiki/History_of_homosexuality then there's an astonishing blank between "Antiquity" and "Early modernity". There's a couple of paragraphs but it's mostly just a list of evidence-free insinuations that hey, someone famous must have been gay.
Given that homosexuality would have been harshly punished in this period, where are the records of it? Where are all the beheadings? It can't have been that they were _that_ good at not getting caught for fifteen centuries in a row. Even the Spanish Inquisition, which charged 500 people for sodomy, only alleged a handful of cases of _homosexual_ sodomy.
Punishment was also directed toward men. Female homosexuality was something barely acknowledged as possible. Of course, conceiving it in terms of "orientation" rather than behavior is also relatively recent.
~40 years ago, used to have a house mate who worked in William Dements sleep lab around its start at Stanford. Told him of my noticing sometimes dreaming in color and sometimes in B&W. He said Dements' lab had determined that color vs B&W was related to remembering and depth of sleep... lighter sleep led to remembering color dreams while deeper only B&W. Interestingly, the color dreaming nights were correlated to my taking Sudafed before bed (before learning of Sudafed sleep impact). Stopped nighttime Sudafed, stopped remembering color dreams.
A messy possibility: what if black and white television affected how people remembered their dreams rather than the actual dreams?
A research possibility: Look at descriptions of dreams from the time and place and see whether color is mentioned.
My family was not well off, so I first saw a color TV when I was in high school. My entier youth was spent with black-and-white TV (albeit not much of it). I can recall no difference whatsoever in the nature of color in my dreams between youth and young adulthood, nor imagine any difference in how I would describe them.
Counter anecdote: when I was a kid I read a lot of books and rarely watched TV. For a number of years, I recalled my dreams as text descriptions of the events, rather than as sensory input directly
Counter-counter anecdote: I read a lot of books as a kid; my remembrance of dreams comes and as far as I can remember has always come in mainly two categories: vivid sensations (associated with the feeling of vividness), immersive situations where I mostly will the dream into existence around me; and unstructured sparse sensations relating to my previous-day concerns (e.g. flashes of gameplay moments from a video game I played with intense focus very late).
Sorry, my mistake, guess I'm feeling too fighty today.
"Culturally expected" is a complicated term - I think the culture-bound-syndrome perspective is that cultural expectations go from "nobody's ever heard of or considered it" (eg transgender in Arabia 100 years ago), "people have heard of it and know it's a think that happens 1% of the time" (eg transgender in US today), "people have heard of it and know it's pretty common" (eg following cis gender roles today), and "people don't even realize they've heard of it because it's just considered the universal obvious thing (being cis in Arabia 100 years ago). I don't think *anything* is at the far extremes of cultural expectation in modern America, except maybe things like "not being object-sexual".
Lots of people have sex with inanimate objects, that usually just gets lumped together with masturbation. There was a mainstream movie more than twenty years ago: https://www.imdb.com/title/tt0163651/
hmm by the by i have discovered
https://en.wikipedia.org/wiki/Schizoid_personality_disorder
by wikipedia surfing and I ... feel like there should be a ddx: gender dysphoria here ( among amab patients?)
like, patients like this will not exactly *tell* you that they fantasise about being a girl on account of that's private
but it's pretty much what undiagonised gender dysphoria looks like
especially suspicious if adolescent onset
tbc I have no idea what psych people think about this but it seemed worth mentioning
I think calling people fantasizing about being a girl “gender dysphoria” is an example of a culture-bound effect.
For example (all details changed on account of “that’s private”), I might fantasize about having wings and flying around the clouds. But calling that “dismorphia” or “body dysphoria” says more about how others see my fantasizing than it says about how I feel about it. I have exactly zero trauma about not having wings, but if people would fuss about how sad I must be about my misshapen, wingless body, especially during my childhood, I might.
What would be your biological / cultural breakdown on "demonic possession"?
Any answer he gives you would just be what the demon possessing him wants him to say.
M Scott Peck, the psychologist who I associate most with runnaway bestsellers (with his book iThe Road Less Traveled from the 1980's) went on to write another book called People of the Lie in which he discusses human evil, and in one chapter actually describes cases of what seemed to him to be demonic possession. As I recall, he puts them forward pretty much straightforwardly. My sense is that there are therapists who encounter these kinds of things and say something like, Yup, More things in Heaven and Earth than are dreamt of in our training programs.
My guess would be that "hard-to-resist impulses to do bizarre/bad/uncharacteristic things" has a large biological component, and "what you attribute the impulses to" is approximately 100% cultural
"Gender dysphoria shares some resemblance to culture-bound illnesses; I would put it around the same level as anorexia."
I agree with this, but I think, given the physical and emotional cost of dysphoria and associated treatment, this implies we should try to *turn the culture knob down* so that we're not steering more people into dysphoria.
In practice, I think this is one of the strongest case for *not* doing awareness campaigns, especially for young kids. Encouraging little kids, to cultivate sensitivity to sensitivity seems like it has the potential to elevate a number of manageable discomforts to dysphoria.
See the last section of https://astralcodexten.substack.com/p/book-review-crazy-like-us , "Towards Mental Health Unawareness Campaigns".
Yep! I don't think I'm as worried about the spot the "therapy talk dial" is turned to, which is the other very strong awareness/sensitivity campaign. But that might be because one stream of therapy talk is more CBT focused, and thus more skeptical of reifying your passing feelings while the trauma stream is more about introspecting on your feelings and asking "Is this a deep wound that I will struggle to heal?"
I like the Eastern Orthodox framing of some intrusive thoughts/feelings as logismoi, which you don't *need* to incorporate strongly into your sense of self. You can note them, and then choose whether to embrace them or just wave them off.
Whoa! Scott! I think you should be really precise about what you mean here and not vaguely gesture towards endorsing 'unawareness campaigns' for gender dysphoria.
I want to say this without accusing you of transphobia because I don't think you are, or saying you have to be responsible for all readings of your text. But you are basically endorsing the strategic logic of the conservative "anti-groomer" movement. If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal. Heck your theoretical mental health unawareness campaigns involve book burning and cancellations, what would that mean for existing trans adults or the percent of people who will continue to be trans post unawareness campaign? I'm not sure you can do a sort of clinical anti-gender dysphoria awareness campaign without empowering a lot of people who are transphobic and homophobic.
1) I don't think Scott was seriously suggesting a response that extreme, just hypothesizing about a culture as obsessed with "unawareness" campaigns as ours is with awareness campaigns.
2) If (IF!) gender dysphoria is more culture-bound than not, we've got much bigger problems right now than the consequences of possibly empowering transphobes.
>1) I don't think Scott was seriously suggesting a response that extreme, just hypothesizing about a culture as obsessed with "unawareness" campaigns as ours is with awareness campaigns.
And that's fine, but he should be careful about how he talks about it.
Counterpoint: No, he should not be (especially) careful about how he talks about it, because the worldview that says trans stuff is *special* and should be talked about more carefully than suicide or abortion or elections or gangrene is wrong. Lots of things affect people, and we don’t create special rules around how they can be discussed, nor should we.
A basic attempt to be correct and to say what you mean is all that is required.
Suicide and abortion and elections should all be talked about carefully. Gangrene doesn't have the same political connotations. It can be talked about casually.
I'm not saying trans people are special: I'm saying that when people misinterpret well-intentioned comments about trans people it can have disastrous consequences.
About being careful about how he talks about it: I get it, about the dangers of saying things that can be empowering to the transphobes. But I think it's almost always a mistake to keep quiet about your own perceptions and views because they can be weaponized by the wrong side. If the wrong side does pick up on what you said and try to use it, then you have a responsibility to say loudly and often that that is *not* what you meant, and clarify what you did mean. And anyhow, there's already plenty of stuff floating around in the media and cultural soup that can be weaponized, most of which will yield juicier sound bites than Scott's smart little essay.
It's destructive for people with authority to say what they think will make people do what they should, rather than tell to truth an exhort people to do what they should. That's herding, not informing and advising, and people eventually sense what you're up to and began to hate and distrust you. Think about the way the government initially talked about masks -- "No you don't need them" -- because they were concerned about medical staff not having enough. They should have said, yes, masks keep you safer. We are going to transfer most of the supply to medical staff and other essential workers who need it most, so they will be hard to find. Until we can get more on the market, here are some ways to improvise a mask that are better than nothing.
> If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal.
I don't consider myself to be transphobic. Perhaps in the future we will be able to seamlessly transition or alter our bodies without risk or side effects, but until we reach that point I think it is obvious that people who attempt to medically transition are going to endure a very difficult experience.
Modern culture has far too much faith in the medical system. They are better than nothing, but every procedure has enduring costs. I've had a several surgeries and every one has left me with reduced mobility in the joint and nerve damage.
It feels like there's a false choice in the statement "If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal." I think there's a difference between fearing your child will identify as trans vs. fearing your child will become a permanent medical patient from a medical establishment that barely understands what it's doing when it comes to medical care surrounding trans-related questions.
Take 'puberty blockers' as an example. You can't 'pause' puberty any more than you can 'pause' aging. What you can do is SKIP puberty and sexual maturation by messing up endocrine signaling in ways you don't understand. I've heard that some of the kids who get treated never go through puberty and later in life are unable to experience sexual pleasure.
Should an 11-yo be making the decision to take sex off the table for the rest of their life? If they're trans, but got puberty blockers and never developed sexually, maybe they have a bit less dysphoria about their body but they have a lot of anxiety about having mature adult relationships because they never fully sexually developed and therefore can't connect on a pivotal aspect of most relationships. Is it really a decision between that and certain death for large numbers of kids? Call me skeptical, until I see a good meta-analysis of multiple RCTs, with long-term follow-up.
Years ago I read Ending Medical Reversal, www.amazon.com/dp/1421429047/ and a lot of what I hear described sounds like it's ripe for later medical reversal: panics about 'doing something', talk of how the something they're doing 'makes sense' logically, review from medical patients that they're happy with the immediate results of the treatments as justification for treatment efficacy, absence of RCTs and long-term follow-up, medical practice preceding the accumulation of scientific evidence.
I think it's fair to be concerned that your child's treatment will later be realized as a major medical error without linking that concern to their future gender identity.
Yes, that's a different thing. It's possible to say that you will love and accept your child whatever their gender identity but that you are concerned they will be misdiagnosed with gender dysphoria.
However, if you think having gender dysphoria and treating it through gender transition is a really bad life outcome (for many of the reasons you raise about medicalization), and that gender dysphoria is a cultural contagion. The logic of trying to prevent that cultural contagion by limiting trans visibility is hard to resist.
Probably because there's some interaction among the issues at question:
1. Is the incidence of (for lack of a better term) 'transient' gender dysphoria increased by cultural contagion?
2. Do current medical interventions cause long-term/permanent harm to those who eventually detransition/desist?
3. Do current medical interventions cause long-term/permanent harm to those whose trans identity persists?
4. Do cultural attitudes interact with medical decision-making in a way that biases transition and medical interventions with long-term/permanent consequences?
5. What's the ratio of 'transient'/persistent trans identification and medicalization?
If you think, "currently available medical interventions for a 13 yo trans kid generally lead to bad long-term outcomes," you may want the kid to be able to come out and express their gender identity, but still be concerned that this will lead to harmful long-term medical exposure. In that case, you'd want to be an outspoken critic of the current medical system, but encouraging of cultural attitudes.
If you think a majority of those who get medical interventions will likely desist/detransition, you might be opposed to both the medicalization of trans and the cultural attitudes. I'm not sure how to frame this so as to make it less of a false choice, since it doesn't seem we can have a nuanced discussion of the subject. For a lot of issues, it feels like you're either "pro-[whatever]" or you're "[whatever]-phobic/-ist". Sometimes it feels unpopular to be "pro-'I don't have a dog in this fight, but I'd like to take our time gathering evidence for the open questions in this field before making large-scale societal changes, especially those that have potential long-term medical impacts'".
Well, yes, logical outcomes are often hard to resist, even when there is a full progressive-media-medical complex trying to undermine them.
> The logic of trying to prevent that cultural contagion by limiting trans visibility is hard to resist.
I'm not clear on why it should be resisted, in principle. If the causes of gender dysphoria are partly cultural, then anti-awareness campaigns would merely prevent that fraction of the population from developing it for cultural reasons, leaving only the biologically driven gender dysphoric people to receive the prolonged, uncomfortable surgical treatments they need. As long as there's no stigma associated with this condition, what is the problem with this outcome?
You are making a lot of leaps here. I dont see anywhere that supports that Scott "think[s] one of the worst possible life outcomes for your child is that they become trans". I also don't see this echoing any of the "anti-groomer" talking points. In the review of Crazy Like Us, Scott writes, in the Unawareness universe "Secretly the psychiatrists will still treat anybody who comes to them, they’ll just make them swear an oath of secrecy first." So he is clearly not advocating that people should receive treatment. He is only wondering what it would be like if culture didn't promote certain conditions. Thats very very far from the anti-groomer bigotry that casts LGBTQ people as pedophiles and defectives.
No, I think this is hugely loaded and we should be really careful about it. I'm not at all blaming Scott for what the anti-groomer movement does But, if you're suggesting gender dysphoria is largely a cultural contagion, and that maybe we should act to reduce awareness of that cultural contagion, the behavior of the actual movement operating on your theory seems relevant.
Receiving treatment while swearing an oath of secrecy doesn't resolve the problem of trans people being visible in society, not everyone is going to pass and people are going to ask, what happened there?
This strikes me as similar logic to “if you’re questioning biblical science, and the other people questioning biblical science are witches, maybe you should shut up.”
No, in fact, he shouldn’t. He should say what he believes is true rather than being cowed into silence by an argument founded on guilt-by-association. If you have an argument against what he thinks is true, make it; but if all you have to offer is tone policing, your contribution has negative value.
"I'm not sure you can do a sort of clinical anti-gender dysphoria awareness campaign without empowering a lot of people who are transphobic and homophobic."
Interestingly, this doesn't make it a bad idea. Imagine if we could erase anorexia by running an unawareness campaign, but also it would empower the Healthy At Any Size people who say it's perfectly normal to weigh five hundred pounds and die of a heart attack at 40. Would this be bad? Well it depends how many anorexics we avert vs how many morbidly obese people we create. It's not enough to gesture at some possible side effect, you have to actually run the cost-benefit numbers!
>If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal.
I think the trans activists seem to spend a lot of time convincing everyone that absolutely one of the worst things that can happen to people is be trans. They talk incessantly about suicide and abuse and what a struggle it is.
"If you think one of the worst possible life outcomes for your child is that they become trans, limiting all exposure to trans representation is ideal."
But I do think becoming trans is one of the worst possible life outcomes for my child. Their suicide rates are sky high. I didn't get that from anti-groomer conservatives; I got it from trans activists.
Scott, I'm a fan of your work, but I'd be a little less casual about saying stuff like this. What would a "gender dysphoria unawareness campaign" look like in reality?
I understand you're not saying this out of malice, and I'm not saying you're necessarily wrong, but I think it's important to be careful about how talk about it.
Do you think gender dysphoria awareness advocates should be less casual and more careful as well, are you certain they are all incredibly careful to ensure that each word is chosen with the utmost concern, or do you think that their failure modes are less significant than Scott's?
In the Crazy Like Us review, Scott writes "Secretly the psychiatrists will still treat anybody who comes to them, they’ll just make them swear an oath of secrecy first." So in a world with a "gender dysphoria unawareness campaign" people still get the treatment they ask for.
This was just a quick speculation on Scott's part. I don't see him actually proposing unawareness campaigns as a solution to anything. In fact he concludes "I’m not sure if this culture would have more or less mental illness than our own." So he's not even sure it would work!
As the old saw goes, we’re in a hole, the first step is just to stop digging.
So, for starters, we should relax existing awareness campaigns. Take gender ideology out of middle and high school curricula, stop doing events to raise awareness aimed at young kids—like, say, the “drag queen story hours” that became a culture war flashpoint in the past. (Hopefully admitting that the right was correct about them won’t wound your ego too much.) The movement should probably rebrand away from “protect trans kids”. We can understand that the people leading all of those efforts were well-intentioned and sincere, but also recognize that as it so happens the harm outweighs the benefit, and it’s time to put down the signs and go home.
Finally—what should Scott have really put differently here? His tone strikes me as incredibly careful and well-couched with caveats. To go out on a limb, I don’t think the tone here is your problem at all; rather, it seems like you are very uncomfortable with the implications of his ideas, but unable to present an argument against them, and defaulting to criticizing his tone instead. Consider that the truth might be uncomfortable, and you might have been wrong in the past, and don’t shoot the messenger.
Exactly. The only thing we know for sure at this point is that transsexuality and homosexuality are a behaviour. The rest is speculation. First and foremost, all people who practice any kind of behaviour which does not obviously harm others should be treated with respect. That being said, parents are well within their right to encourage or discourage in their children any kind of (non-harmful) behaviour they wish and here is where we have the problem. Certain movements are working to promote "awareness" of certain behaviours in public schools to other people's children. Imagine if someone suggested that we have should be having Catholic storybook hour in public schools which taught kids that bread can turn into flesh and wine into blood? (something which is not much more fantastical than that a man can turn into a woman)... I think all of us need to learn to be content with having our non-harmful behaviours respected and tolerated by society, but not expect that our behaviours should become part of the public school curriculum...
I disagree with the extension of this logic to sexual orientation. It strikes me as less culture-bound than gender dysphoria—even if, as Scott points out, everything is at least a bit. Also, life outcomes for people who are gay—in terms of e.g. suicide rates or lifetime earnings—are far better for people of nonstandard sexuality than people of nonstandard gender. Differences like these make me think that gender and sexuality are different phenomena to investigate separately. The best approach in one case may not work for the other.
For all that gender is useful to us in terms of giving us a pre-assembled toolkit for identity construction and understanding social roles, it is awfully constrictive and oppressive. Many people are not able to find satisfactory ways to self actualize within the confines it sets, and there are considerable social costs to working outside the boundaries. These discussions about gender ideology are helping to break down those boundaries, to expand the Overton window of gender identity, to work towards a future where everyone is a little bit more free to manifest their individuality.
Moreover, "but think of the children" is a rallying cry that has been used to censor, oppress, and enact very real harms onto queer people and queer communities for a very, very long time and I absolutely will shoot the messenger who starts crowing about that.
Fine, but teach that ideology to YOUR children. Not to mine. I absolutely will shoot messengers who start crowing to my children that they are free to be "shes", "hes" or in betweens because gender is subjective. Biological sex is the only objective truth and the one which should be being exclusively taught in public schools to our children. The rest is ideology and can be taught in the home.
Rather than reducing discussion of gender dysphoria, depression, anorexia etc. to reduce social contagion, could the exact opposite approach work? Public education about how social contagion works and how many popular culture-bound illnesses appear to have a strong social contagion component, as a prophylactic.
I'd really love to see a longitudinal study that showed some children cartoons simply explaining these disorders, and how often they are "just in your head" and that if you don't think you'll get them, you won't, and seeing if these children ended up developing less of these culture-bound illnesses. Beyond the internet culture war argument implications, if this turned out to be an ultra-low cost method to reduce prevalence of depression and anorexia it would be incredibly valuable.
"Oh my God! I just heard about this new mental disorder! And it's well known from social contagion theory that people who hear about new mental disorders are disproportionately likely to acquire those disorders! I'm doomed!"
--Not sarcastic. That's exactly how I predict that would go.
A friend remembered hearing about the dangers of lead paint in the late 70's, but as a kid, that just meant "WHAT? YOU CAN EAT PAINT CHIPS? NEATO, LET"S TRY IT"
That exact issue is the problem with D.A.R.E campaigns.
DARE definitely made drugs seem like amazing, wonderful experiences.
And they taste so sweet (apparently the actual reason children-eating-lead-paint becomes a big problem).
"Lead paint - delicious but dangerous" as the Simpsons skit put it.
Go look up medical student syndrome. ;)
It's one level up from that. Jacob is recommending that we expose people to a selection of compelling mind-viruses, and that we pair these with the message: "mind-viruses like these tend to stick in your brain and destroy your life".
Imagine if upon entering med school the students were told: "If you start to think you have a disorder, this wildly increases the chances that you will in fact catch it!" To put it mildly, I do not expect this to decrease medical student syndrome.
By the same token, I do not expect Jacob's recommendation to diminish the spread of mind-viruses.
Might this also mean that the placebo effect would not exist if we didn't know that it does?
https://journals.lww.com/pain/Abstract/2015/12000/Increasing_placebo_responses_over_time_in_U_S_.27.aspx
What if we start telling people that hearing about a disease makes you less likely to think you have it? Call it pathological anpathognosia or something to make it sound really impressive!
Spectacular
Social Contagion, A Basilisk. Someone should tell Elizabeth Sandifer.
Reminds me of the priest and the Eskimo.
Eskimo: If I did not know about God and sin, would I go to hell?
Priest: No, not if you didn't know.
Eskimo: Then why did you tell me?
That would make for a good novel. A secret organisation dedicated to stamping out knowledge of a religion just to guarantee that the shield of ignorance remains.
Plot twist: God sends a double agent to infiltrate the secret organisation and undermine the agenda of ignorance.
I think I'm sympathetic to "telling people gender dysphoria exists is sort of an infohazard if you're not letting them transition, net positive if you are?"
although given how slow our culture is about this this is an argument against telling kids/teens about gender dysphoria
That implies the transition itself is healthy, when it seems distinctly unhealthy due to the lifelong hormone treatments and highly invasive surgeries, which often result in the patient becoming sterile.
Why would you think of it as net positive to be allowed to transition, such that sharing the infohazard itself becomes net positive?
The assumption is that if the transition improves quality of life, then it is healthy. A bit like any psychiatric treatment (anti-psychotic drugs.....).
Right, I get that. Alex seems to be indicating that the "infohazard" part is good if you allow people to transition. I see an infohazard as separate from people who may have "naturally" been trans and were already seeking treatment. The infohazard sounds bad all the way around. Alex's follow up response indicates that they see it as something like "someone may not know they are trans, so allowing that knowledge to exist in general society can provide a path to seeking treatment that would not exist otherwise." I can see the benefit of that, though it's very difficult to weigh that against the problem of an infohazard *causing* orders-of-magnitude more people to believe they are trans and therefore having all of the difficulties that "naturally" trans people have.
So what's your solution? To censor trans people from speaking about their experiences and fighting for their civil rights? To punish them, their friends, and their families if they try to work towards a society more accepting of them?
Go ahead and say the quiet part out loud, Mr. Doolittle.
Assuming that people are either trans or not, what if the full realization of their gender dysphoria actually creates more suffering than the transition can alleviate? Maybe they could have lived their whole lives with a vague discomfort and the occasional thoughts of "Might be nice to be the opposite gender", but when it really hits them, they now experience the stress from knowing exactly what they are dissatisfied about, being misgendered, and wondering if anyone will accept them if they transition. I don't doubt that transition improves quality of life for people who are already suffering from gender dysphoria but it's questionable that it would necessarily improve it for those who *may* experience it but remain blissfully unaware in the mean time.
I can only speak for myself, but as someone who plausibly is trans because of social contagion (was part of a friend group where ~80% of us came out as some flavor of trans over about a 5-year period), I genuinely think my quality of life is as good or better than it would have been otherwise. Being my AGAB has been socially and to a lesser extent physically uncomfortable for as long as I can remember. Drawing attention to that dysphoria was uncomfortable for a few years, but between hormones and not being a teenager anymore, I am literally the most comfortable with my body that I've ever been. Was it the only solution to my problems? Maybe not. Is it better for me than an eating disorder or doing a lot of cocaine? Definitely yes.
I've identified as trans for pretty close to exactly 9 years now. Can't speak to how I'll feel in 9 more, but at the moment I wouldn't change anything about my situation.
I'm glad your life has improved and I hope your experience is typical, but I do find it interesting that you mention 'not being a teenager anymore' because I think that's an important factor in many people's life satisfaction, including my own.
Transition probably improves quality of life over untreated gender dysphoria, but still results in a substantially lower quality of life over not having gender dysphoria, really, not even a little bit, because you never heard of it the way people in pre-1994 Hong Kong never heard of anorexia.
If so, and if gender dysphoria is mostly culture-bound, then knowledge of gender dysphoria is indeed an infohazard that will on average reduce quality of life. Just not as much as it would if we talked a lot about gender dysphoria but didn't allow treatment.
Caveat 1: At present, there is a fairly large support community for transgender individuals; rather less so for other mental illnesses. So it is possible that transition results in a net improvement over quality of life over "I never heard of gender dysphoria, but my depression really sucks and nobody seems to care", because it gains access to that support community.
Caveat 2: All bets are off if we manage to both create a fully tolerant society with no transphobia, and also develop the medical technology for *complete* gender transition, including normal fertility in one's new gender and ideally fully reversible.
> Transition probably improves quality of life over untreated gender dysphoria
Have we done any actual studies on this, though, or are we just guessing?
If we're just guessing, then my guess is that untreated gender dysphoria is usually transient, and that treating it is worse.
And if that's not the case overall, then I think it's probably the case at least for younger and newer cases of gender dysphoria. Starting a kid on the path towards "transitioning" the moment they express a vague wish that they were born the opposite sex is going to ruin the lives of many kids who would otherwise have gotten over this phase on their own.
There have been a number of studies on this, yes, and the numbers for people diagnosed with gender dysphoria who don't get treatment are appallingly bad (double digit suicide rates), while the numbers for post-transition people are significantly worse than for cis people but much less bad.
Of course, every study in this field (as in many fields) is done by a group with strong pre-existing opinions on the issue, so detractors will frequently claim bias - I don't know nearly enough to judge those kinds of claims
Aside from formal health systems, which are vast if under resourced, there are large support networks for a variety of mental illnesses. I'm not sure where you are, but I could probably put you in touch with a local NAMI support group for any number of mental health concerns relatively rapidly.
From my understanding of the OP, culture bound syndromes are caused by the brain noticing various symptoms, and then fitting them into a "narrative" or "theory" that is present in a culture. This then creates a "spiral" effect where they start to notice more and more stuff that fits the theory, exacerbating the illness.
Applying this to gender dysphoria, we have someone who has vague feelings of depression and unhappiness about their life and dysphoria about their body. Because it is available in the memosphere, they lump all these symptoms together into gender dysphoria, and then notice more stuff to be dysphoric about. Then they transition and all the dysphoria goes away or is significantly lessened.
I think where you are coming from is that you are assuming that since those "original" vague feelings of depression and dysphoria were not caused by gender, a gender transition won't fix them. Maybe that's true, but maybe not. Brains are weird. Maybe somehow lumping the "original" symptoms into the gender dysphoria narrative will result in them getting "fixed" by transition. The end result might be someone who is happier on the net.
If this is the case, someone who underwent hormone treatments and surgeries might be happier then someone who never had gender dysphoria, but did have the "original" symptoms that brains sometimes lump together into dysphoria. I don't know, it's highly speculative but most of this field is.
Well or you could just tell them they will be fine in 2 years when they get out of puberty. Or you could give them sugar pills for 2 years. Both of which would probably lead to better total life outcomes (I would bet IDK millions of dollars on this).
Sterility is ambiguous, since some people strongly want to have children, and other people find their fertility to be a burden.
Given human history, in an evolutionary aspect, it seems pretty likely that most people want kids. Some people are abhorred by the ideal, just as some people do not like the taste of meat. But mostly veganism is a social thing, not inate.
I'm not convinced most people want kids. I think most people want sex and are willing to raise children if they have them. That would be enough for evolution, which could hardly anticipate the existence of birth control.
"Willing" to rear children is utterly insufficient to the magnitude of the task of parenting. You have to be deeply devoted to the concept of your children, as well as to the individual children involved, to succeed at the job. Your theory would only work for fruitflies or otters, some species that relies on sheer fecundity, and in which the parental investment is relatively modest, rather than a species like ours, which relies on extraordinarily high parental investment -- we routinely spend 45% of our adult working lifespan (~20 of 45 years) looking after our children.
People don't need to be driven towards procreation to be driven towards behavior that tends to cause procreation in a state of nature. Before you come up with evolutionary just-so stories, you have to notice around you there are plenty of people who either do not want children or want significant control over when and how many they have, with the preference being much lower than their total potential. Evolution self-evidently produces creatures with those desires. This is a fact evolution must accommodate, and if your intuitions about what evolution via natural selection must result in contradict that, that's a sign your intuitions are wrong.
That's a terrible argument. The exception does not prove the rule, biologically speaking. That some people get cancer as children does not prove that there is some adaptivity to childhood cancer. It is (one assumes) an unfortunate side-effect of some other mechanism that is adaptive. Similarly, the existence of a minority of individuals who have zero desire to procreate says jack about what evolution may or may not have built into the generic individual in this respect, so it need no better explanation than "shit happens," and natural selection is hardly a universal amd perfect optimizer.
Sterility might be ambiguous, but having the option removed from you at the age of 11 is much less so.
It is utterly monstrous, when you really think about it.
It’s a net positive for the people who have the sort of gender dysphoria that can only be successfully addressed by transition, and otherwise would have been unaware that this was an option.
It’s a net negative for the people who never would have considered transitioning otherwise and would have found some other less invasive means of addressing whatever symptoms made them susceptible to the “gender dysphoria infohazard”. E.g. upper half of the Kinsey scale female adolescents with typical puberty related body image discomfort.
The balance between these two groups is culturally modulated, but in American culture 2023, I suspect there are more of the latter than the former.
(I ought to add that my personal experience was
-going through puberty and having a sexuality that was not remotely functional and being vaguely dissociated from this and also generally feeling meh
-hearing that gender dysphoria was a thing and as a result of this getting more ~classic dyphoria symptoms and feeling like 'oh fuck I can't live like this"
-transitioning which fixed all of the above)
Having dysfunctional sexuality going through puberty and feeling vaguely dissociated from that is incredibly common in all sorts of people, and something that often gets resolved with time.
Why are you so sure that the counterfactual to receiving classic dysphoria symptoms through contagion is that you live with sexual dysfunction forever rather than growing out of it?
For what it's worth, I've seen transitioning make people I know conspicuously happier for years. It could just be suggestion, but it may be something they really needed.
I've also seen a fair amount from people who said they knew something was wrong, and it took them a long time to find out it was gender dysphoria.
And I've seen interviews with people who detransitioned. (Benjamin Boyce was doing these. I don't know whether he still is.) It's apparently possible for people to be miserable and jump to the conclusion that it might be gender dysphoria when the cause might be something else.
If they're at the point that transition is plausibly the best option, then sure, go ahead. But if the whole dysphoria thing could've been avoided altogether it's a different conversation.
I don't see that dysphoria can be avoided in general, though I agree it also shouldn't be amplified.
If I were running the world, I'd give everyone a year where no one around them cared whether they transitioned or not, just so they can settle their nerves and know what they actually want. This is not feasible.
But wasn't it the whole point of Scott's post? It seems plausible that in not-overdetermined (by hormone imbalance and the like) cases social contagion plays the decisive role, by initiating some kind of feedback loop, which breaks free from normal variance that people ordinarily "grow out of".
"It's apparently possible for people to be miserable and jump to the conclusion that it might be gender dysphoria when the cause might be something else."
Considering that the "something else" might be a condition that really is made worse by one's natal sex, I wonder how much jumping need be involved.
Ehlers-Danlos Syndrome (EDS), a collagen abnormality, provides an instructive example. People with EDS have weaker connective tissues, which keep kicking up their immune system by breaking more, and which can cause some embarrassing cosmetic problems, problems others might have after massive weight loss, only with EDS, you don't have to gain the weight in the first place to have them.
The closest thing to a "cure" for EDS might be androgens. That is, androgens partly compensate for connective-tissue weakness. Androgens help build muscle mass that protect against joint injury, they thicken skin, and so on. Men can suffer from EDS terribly, but overall, the population of men with EDS traits is affected less badly than the population of women. Add in that female fertility is pro-inflammatory, and maybe it's not surprising that the incidence of EDS diagnosis among patients at one gender clinic was measured to be 132 *times* that of the general population (1st reference), with patients with EDS seeking treatment for gender dysphoria being disproportionately born female (89%, 2nd reference), seeking either masculinizing transition or a nonbinary body, with chest masculinization being the most common surgery (58%, 1st reference).
https://parjournal.net/article/view/4858
https://journals.sagepub.com/doi/full/10.1177/20503121221146074
The stereotype is that teen girls' breasts are perky and attractive, that hideously stretch-marked, sagging sacks of flesh are a curse of older womanhood. You don't even have to *want* nice boobs to find growing "granny sacks" instead of "normal breasts" at thelarche embarrassing. The stigma that "granny sacks" are nature's punishment for those who let themselves pork up before slimming down doesn't help. Fat-shaming isn't reserved for the fat to begin with, and appearing formerly-fat is just one more handy excuse for it.
So, EDS can be physically uncomfortable (it isn't always, but it can be), and can make it difficult to conform to notions of what a "normal" body of your sex and youthfulness should look and feel like (not just for women; men with EDS may look and feel "too delicate to be Real Men"). Girls often find the discomfort of EDS worsened by puberty, and the body-horror of puberty dialed up to 11: wishing for a body that's masculinized instead, or to revert to childhood androgyny, seems especially understandable in these circumstances. Add in that androgens can compensate for the underlying defect...
I was diagnosed with EDS in my thirties. I went through female puberty convinced my complaints were either psychosomatic, or a sign that life in general sucks, womanhood sucks, and human sexuality pretty much sucks, too. I was too embarrassed to complain about (what I supposed was really soul-caused) physical suffering to my friends, and too religiously-conservative to transition, but I used to sardonically joke about transitioning. Mightn't God be calling me to transition to manhood and become a monk, some calling that might actually suit me? (Alas, transness is disqualifying for Catholic monastic vows.) I also inferred that the skin signs of EDS were merely evidence that I'd let myself get "fatter than my body could handle", despite not exceeding normal BMI. Maybe a BMI on the high side of normal was just too much for some bodies?... And wasn't "eating too much for your body" gluttony?...
Not "growing out" of "childhood asthma"? Another sign of being "too fat for your body": well-meaning adults reassured me about my asthma in childhood by predicting I'd "grow out of it" (though we now know that's not how asthma works), and everyone knows being a fattie makes asthma worse. Knees already hurt? Not an old lady yet, not an impressive athlete who's "earned" spectacular knee injuries, must just be too fat for your knees! Fatigued? Hey, being fat is tiring! And exactly nobody's surprised when fat girls get painful, heavy periods. Why should a normal BMI rule out being "overweight for you" when other signs of overweight are present? I didn't complain to doctors about my "fat signs", either: I already knew "be thin" was standard advice for such complaints, so why out myself as a delusional whiner?
Since I never got painfully thin, or even model-slim, my guilt never seemed obviously irrational – or even abnormal: teen girls diet. I couldn't manage to abstain from food aggressively enough to achieve typical anorexia, and the horribly-distorted body-image we were taught anorexics have didn't apply to me. I was aware I could count all my ribs, thank you, even as my cellulite dimples remained too numerous to count. Reading through the diagnostic criteria for anorexia as an adult, I went through youthful phases that could have just barely qualified. But not usefully.
My conclusion from all this is that, if going through puberty with EDS induces a desire to transition, the desire is a fairly rational one, and, especially if the EDS goes undiagnosed, transitioning might be the closest thing to symptomatic treatment for EDS that youth – and girls, especially – can convince medical gatekeepers to provide. To jump to the conclusion that transitioning is the solution when "the problem is really EDS" isn't much of a jump. And I have no reason to suppose EDS is unique in this regard. People solve their problems with the tools available to them.
Thank you for the information. I had no idea.
I was thinking of a detransitioner I'd seen interviewed. A substantial part of her apparent gender dysphoria was an eating disorder-- she was hoping that being male would help her lose weight.
"The prevalence of endometriosis in transgender men is" also "higher than the female cisgender population", apparently:
https://www.sciencedirect.com/science/article/pii/S1553465021005598
"Come, you spirits That tend on mortal thoughts, unsex me here" seems an especially appropriate desire for young women with endometriosis that nobody bothers to check for.
I certainly got the message, growing up, that female fertility was supposed to be uncomfortable, but finding it uncomfortable enough to complain of it, much less be impaired by it, was a sign of wussiness, or of something you must've done (like being too fat) to bring additional discomfort upon yourself. Not surprising that this message might lead young women with unaddressed discomforts they did not bring upon themselves to conclude that womanhood itself was the problem.
I know that's how my ancestresses, half of them who had also asthma, and, according to the genetic counselor, probably EDS as well, thought of it. A female body was kind of a raw deal, but also a raw deal one should pride oneself in enduring without complaint or reduced net productivity.
"The closest thing to a "cure" for EDS might be androgens."
Can you say some more about androgens for EDS. I have an acquaintance who has EDS and is having a terrible time coping with grad school because near the end of her first year into her PHD program she developed chronic fatigue syndrome (exhaustion, malaise, exercise intolerance). She and I have read enough of the literature about Chronic Fatigue Syndrome to know that even the doctors who believe the syndrome is a real thing do not feel optimistic about treatment. Seems there's nothing that helps. So she and I are looking for something evidence-based that's worth trying. Can you send me to any info about androgens helping EDS?
First, even the closest thing to a cure for EDS is still likely to be pretty distant. EDS is managed, not cured, and often, slowing decline of function, not restoring it, is what's feasible. (We're premature geezers!) The best way to "recover" function with EDS is to not lose it in the first place (and some lucky people don't). Secondly, for particular vascular problems, such as in vEDS (vascular EDS), doctors may advise blocking androgens to reduce cardiovascular risk (even if that increases suffering and decreases function: funny how high others rate not-dying over not-suffering).
That said:
Tissue laxity from EDS means joints lack normal protection against hyperextension and injury. Joints' range of motion is too wide for safety. To have EDS is to rely more than others do on muscle to stabilize joints, since other stabilizing tissues aren't much help. Muscle-building therapy helps brace joints from inside out, reducing pain and fatigue. Here's a study on strength training as anabolic EDS therapy:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241422/
and one on strength training for the hypermobility spectrum (which EDS is on):
https://pubmed.ncbi.nlm.nih.gov/32670599/
Exercise intolerance makes physical therapy harder, but usually not impossible. Finding a sweet spot that achieves rehab without triggering the intolerance can be maddening though.
And now, to hormones:
The bulk of research suggesting androgens can protect and strengthen connective tissue isn't done for EDS, but to explain the difference in injury rate between male and female athletes, especially, it seems, for knee injury. Complicating matters, genetically male and genetically female cells don't respond to androgens identically, and sex hormones interact. Transmen might not find androgens as protective against EDS as cismen, but testosterone still reduces range of motion (desirable in EDS) in female Wistar rats (measured with a wee goniometer!):
https://pubmed.ncbi.nlm.nih.gov/24642882/
Here's a study showing higher testosterone correlates with stiffer ligaments in human women, too:
https://journals.physiology.org/doi/full/10.1152/ajpregu.00829.2004
Testosterone protects cartilage:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005627/ (this is just on male rats, though)
and strengthens (not just stiffens) ligaments:
https://www.sciencedaily.com/releases/2016/09/160920130838.htm (again, male rats)
and, of course, builds muscle, even in women:
https://www.reuters.com/article/us-health-running-testosterone-women/boosting-womens-testosterone-can-increase-muscle-mass-and-endurance-idUSKBN1WW2ZK
Here's a chapter from a medical book entitled simply "Sex Hormones and Tendon":
https://link.springer.com/chapter/10.1007/978-3-319-33943-6_13
Little research seems done on anabolic steroids for rehabbing damaged tissues, but there's some – for example:
https://journals.sagepub.com/doi/10.1177/03635465990270011101
Anecdotally, EDS patients find that testosterone helps, or are mad as hell that docs won't try it on them, or both:
https://naamahdarling.tumblr.com/post/693428741336072192/testosterone-can-treat-hypermobility-fucking
"I saw a reference on the internet to even low doses of testosterone helping with joint stability- and therefor preventing or slowing joint damage. I brought it up to my doctor tentatively... She agreed readily that this was well known and there were studies to back it up.
"I asked her WHY, in the years she’d been treating me, she NEVER brought this up. She confided that there were Side Effects. I listed the effects I’d seen on my friends who’d been on testosterone for years, and she nodded along. I waited for her to add something more dangerous that might apply to me.
"She had nothing.
"She really believed it was such a sure thing that I would rather have chronic pain and potentially reduced mobility than having a lower voice and some extra hair."
(I would mind if EDS, which has broken so much else, also broke my voice, but then, I sing.)
"Almost exactly 1 year in on low dose testosterone gel and... my pain hasn’t been lower in probably 15 years and I’ve stopped worrying about mobility loss. Every part of my health is improved."
Here's another EDS patient using testosterone shots to enhance physical therapy:
https://www.reddit.com/r/ehlersdanlos/comments/2qh1mv/hypermobility_steroids_and_pt/
"I have been getting testosterone shots for a couple months now, and I have definitely seen improvements. It has helped me build muscle to support my joints, making physical therapy much more effective."
Some people try to treat EDS with the synthetic anabolic steroids bodybuilders use, apparently sometimes with success, but results seem mixed (some of these steroids apparently damage cartilage, others may not).
EDS can suck you into an overexertion-injury-deconditioning cycle, where attempts to recondition provoke injury that forces even more deconditioning, worsening exercise intolerance. EDS can also monkey with the autonomic system and blood pressure, which may worsen exercise intolerance. Some people find eating extra salt helps with this. Autonomic dysfunction can also – whee! – cause/mimic psychiatric distress:
https://edser.weebly.com/notes-from-2013-conference/dr-alan-g-pocinki-pseudo-psychiatric-symptoms-in-ehlers-danlos-syndrome
https://youtu.be/mBBziPPeI1E?t=412
My heart goes out to your acquaintance. I didn't get an EDS diagnosis (much less pertinent treatment) in time to get my PhD, and, even if I had, could I have managed without having personal assistants (which I couldn't afford) to manage the life stuff so I wouldn't be diverting my limited reserves from academics? (A community that loves you enough to offer assistance gratis, and big enough that members don't burn themselves out from that, would be even better, but realistically, how many grad students get that?) If they don't harm sleep, or worsen underlying dysautonomia, ADHD meds can blunt EDS fatigue, help attend away from EDS discomfort, and generally help anyone be their own manager despite a body that's not cooperating. They're just a band-aid, but sometimes we need band-aids.
PS: Here's some info on monkeying with feminine hormones to decrease EDS discomfort:
https://massivesci.com/notes/ehlers-danlos-syndrome-hormonal-treatment-contraceptives/
https://www.hypermobility.org/hormones-and-hypermobility
Midge, thank you so much for this cornucopia of information! Is there a way I can stay in touch with you in case I have more questions? If you have your ACX responses forwarded to your email, I can just contact you by putting a post here. If not, is there some other way I can reach you? Also, do you know of any good resources on the internet for info about EDS or Chronic Fatigue? A forum like this, populated entirely by smart sensible people would be ideal (but that's a pipe dream I know). Friend would probably be willing to try anything that's evidence-based, but not weird faddish stuff (though of course it's not always possible to separate the wheat from the chaff). Her situation is very difficult: She knew from a young age what she wanted for a career, and is very gifted in the needed skills. Managed to go to a top undergrad program and get into a top grad program -- then a year in began to have chronic fatigue. She is continuing to meet her grad school responsibilities, but has a research advisor who has Asperger's or similar, and truly seems to think of my friend as a very well-built AI who can be trained on the adviser's body of research and thereafter will be quite a useful assistant. Advisor makes appointments with friend, then cancels at last minute or is 90 mins late. Asks friend to do investigate certain obscure ideas, and refuses to have meetings to explain things that are so advanced that even the post-docs in the department do not understand them. I'd like to wring her neck. Meanwhile friend's exercise intolerance is so bad that having to walk 15 mins to a meeting left her exhausted for the whole next day.
I do get ACX responses forwarded to email, and have starred your reply. Hopefully, that means any future replies in this thread won't get lost in my inbox.
Overall, the best online resource for EDS is knowledgeable, patient, and skeptical browsing to trawl for information and see what comes up – DIY research, in other words. Since DIY research competes with academic research for an individual's reserves, friends/family who could help your friend with "presearch" (initial trawling) so she can focus on more wheat, less chaff, and divert less energy away from academics, might help her. The good news is that many with these sorts of chronic illness are bright, sensible people whose bodies have to some degree thwarted their career plans, and so who find research on behalf of someone they've never met welcome mental stimulation. The bad news is that chronic illness can leave people desperate and gullible to quackery, or invested in risky experiments. I've noticed there's a paranoid-but-gullible cognitive style that's particularly attracted to quackery, and understandably common among the chronically ill (who've often been genuinely let down by "the system").
That said, here are some specific resources:
The Ehlers-Danlos Society:
https://www.ehlers-danlos.com/
Speaking of which, I forgot to mention that mast-cell activation may play a role in exercise intolerance, too:
https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/
"To respond rapidly to infection or cellular damage, MCs [mast cells] express germline-encoded pattern recognition receptors (PRRs) that recognize unique bacterial, viral, fungal or parasitic components known as pathogen-associated molecular patterns (PAMPs) and host-derived molecules, called damage-associated molecular patterns (DAMPs)" – and the EDS body seems extra-DAMP:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6096630/
Even sterile tissue injury triggers immune mobilization. When everything works right, that's good! It's how you heal – and build muscle:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452982/
But once the immune system is mobilized, it may not settle down. This reference addresses high-energy trauma, not the accumulation of low-energy traumas common in EDS, but since EDS yields poorer prognosis for tissue recovery, it seems relevant:
https://www.frontiersin.org/articles/10.3389/fimmu.2020.01056/full
"Immune dysfunction is accompanied by a temporal shift in the innate and adaptive immune cells distribution... Recent studies have implicated this dysregulated inflammation in the poor prognosis of polytraumatic injuries"
Mast-cell stabilizers are a fairly popular remedy for EDS-related immune, uh... awkwardness. EDS is not an autoimmune disease, but it's common for EDS bloodwork to read as inconclusive for autoimmunity due to vaguely high inflammatory markers. "Immune derangement" seems the official term for conditions of any sort involving abnormal immune activity.
After that digression, onto other resources:
EDS seems something of a cause célèbre in the UK (at least compared to here), so the NHS's and British charitable trusts' info on EDS tends to be fairly good:
https://www.ehlers-danlos.org/
https://www.hypermobility.org/
PainScience.com, run by former Science-Based Medicine editor Paul Ingraham, may be the most useful single consumer reference available on pain management and musculoskeletal care. Why do we hurt? How do we make the most of limited resources in seeking relief and rehab? How can we benefit from exercise despite exercise intolerance? (a personal issue for Paul, an athlete who developed exercise intolerance):
https://www.painscience.com/
(and here's Paul's "Project Try Everything" substack: https://tryeverything.substack.com/ )
The following websites post interesting and informative ME/CF advocacy:
https://www.virology.ws/
https://mecfsskeptic.com/
Now that I've mentioned ME/CF and advocacy, broaching chronic illness to employers or other gatekeepers (including medical gatekeepers!) takes discretion. If not mentioning it at all, then mysteriously floundering, is causing more disruption than seeking available accommodation would, it's fairer to yourself – and others – to pipe up. But even sympathetic people dislike feeling confused or cozened, and while freeloading off claims to illness seems rarer in fact than in people's imagination, it *is* in most people's imagination, especially regarding "invisible illness":
https://sciencebasedmedicine.org/malingering-the-lord-voldermort-of-medicine/
https://www.painscience.com/blog/secondary-gain-is-bollocks.html
My strategy is to avoid multiplying labels. When the geneticist diagnosed me with EDS, he added, "And I'll write down you've got fibromyalgia, too."
"No, you will NOT write that down."
"But fibromyalgia is a normal result of EDS."
"Since it's a normal result of EDS, then EDS, not fibromyalgia, is the specific explanation for my problem. I don't want terms famed for vagueness distracting up my chart."
To his credit, he listened. Others with EDS may attach great importance to accumulating labels describing the symptoms of their EDS, but I'm more cynical, especially regarding labels notorious for harming patient credibility:
https://healthjournalism.org/blog/2018/11/women-more-often-misdiagnosed-because-of-gaps-in-trust-and-knowledge/#:~:text=For%20women%20with%20non,in%2C%20according%20to%20Dusenbery.
"For women with non-acute problems and a longer diagnostic journey, the challenge seems to be to hang on to your credibility as a reliable reporter for as long as it takes for the mystery to be unraveled."
"Too many" labels often strike others as incredible. Though so can blaming a bunch of disparate-seeming stuff on one underlying cause. And certain labels invite distrust, whether or not they should.
For example, since both asthma and EDS involve immune abnormality, I'm not surprised weird aftereffects can linger after I've had a cold. If a cold leaves me with slowly-subsiding vestibular neuritis for two years, then "vestibular neuritis" should make my chart, since it's not a common consequence of either EDS or asthma. But, since slowed or incomplete recovery from infection is more generally a common consequence of both, why mention "vestibular neuritis" anywhere off my chart unless dizziness or vertigo first comes up? Even then, "EDS means I don't bounce back quickly from colds. A cold inflamed my inner ear and my balance hasn't recovered yet," is more prosaic and *unifying*, inviting less speculation like, "Last month it was 'EDS', this month it's 'vestibular neuritis'. Always with the excuses, this one. Wonder what medicalized excuse she'll invent next" – though, if I were *inventing* excuses for myself, I hope I'd invent ones less ridiculous than what I've really got! Plus, since the vertigo is nearly gone now, no point in characterizing myself by it. Many would rather not characterize themselves by their permanent conditions, either, but once something interferes with your life enough, it's a characteristic whether or not you admit it.
An old friend of mine ended up switching PhD programs because his PhD advisor disrespected his marriage. The advisor still had the old-fashioned idea that PhD candidates' spouses count only as candidates' support staff, not as human beings who may need support themselves, and remained stubbornly oblivious on this point. Switching was a wrench, but worked out OK for him. I don't know if requesting telemeetings in lieu of unreliably-scheduled walk-in meetings, or a mobility aid for the walks, would work for your friend, but people who *can* walk, just who shouldn't walk *much* for some reason, aren't "cheating" by using motorized aids to get around – and some aids, like electric bikes, wouldn't even "look like cheating". I know an ex-ballerina whose legs are uninjured but who uses a wheelchair now because docs worry else her aorta might explode. The biggest problem with using mobility aids in EDS is ensuring they don't increase deconditioning. (Though, if the alternative is aortic dissection, deconditioning might be the lesser of evils.)
It sounds like "not answering to a flake" might help your friend the most. Though simply *being* chronically ill can invite the judgment that you're pretty flaky yourself, weakening your bargaining position to demand less flakery from others.
To end on a happier note, this is one of those "inspirational young heroes" pieces that name-drops some EDS research centers:
https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/