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naraburns  nihil supernum  2yr ago (text post)   40245 thread views

Culture War Roundup for the week of March 27, 2023

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No one considers cancer patients experts on how the TOR complex phosphorylates a protein in the MTREC complex, or whatever. We should defer to trans people's expertise on their own experiences, but not necessarily on cutting edge medical science. As Barnes says, trans activists often speak on behalf of trans kids, trying to give them the acceptance and support they wish they'd had at that age. But some fraction of the kids coming into clinics need very different support, and someone needs to speak for them too.

I have noticed, from my now terminated stays in forums and places proximal to these kinds of people, a lot of trans people who are "Dr Wikipedia" types. They think they can DIY better than any clinics can help them, that they're fully informed and aware, and that they have a right to pass that knowledge on and push it onto minors with basically no oversight. I have never seen this kind of behaviour in any other kind of group; you don't get depressives telling each other which pulls to cut with which other ones and what substances to take at the same time in nearly the same kind of way.

I know that a lot of people on some level, think doctors are idiots sometime, but these types of people eschew the medical establishment entirely and think their internet research trumps actual formal education. Is this what leads to sub-optimal trans outcomes being so common? I don't know, but I wouldn't bet that it has no role -- and the existence of anyone who would tell minors not to go to a doctor and just take the stuff they'll send them through the post instead because trust me bro I read it on wikipedia breaks me out in hives.

Is there any other population of people who thinks they know better than doctors? Maybe the only ones I can think of are faith healing types or new age alternative medicine types, and I don't think that's quite precisely analogous.

Is there any other population of people who thinks they know better than doctors?

I'm not able to find any trace of them now, but starting in the late 90s through at least the early 2010s there were multiple fora and other corners of the internet where schizophrenics encouraged each other to stop taking their meds and reject doctors and the medical industry as a whole. This was generally couched as the doctor being One of Them, and In on IT. Schizophrenia is probably uniquely susceptible to this sort of thing; especially intelligent sufferers are often quite able to conceive a very internally convincing grand theory of the conspiracies against them and further transmit these to others over the internet in a way face-to-face interaction, which triggers the delusions and paranoia, cannot. I know from personal experience working in rehabilitation that online shopping as been a godsend for some people with schizophrenia who couldn't manage trips to physical stores without navigating multiple triggering events. To have people you can speak to without having a triggering event, who understand you and sympathize with you for the first time in a long time can be overwhelming in a positive seeming way at first. Then these newly trusted online friends tell you that nothing is actually wrong with you and it is in fact the meds that are doing it to you. Most hosting companies shut these fora down pretty fast once its brought to their attention however, and schizophrenics have no political organizations, PR orgs, or lobbying groups. Being genuinely, profoundly disabled they tend to lack any sort of cultural clout they can pivot into bullying people.

I think the "tell your doctor you have these symptoms so he'll prescribe you T" people are just the tip of the self-dx iceberg. For years on Tumblr (and now TikTok) it was common to see teenagers insisting that they were perfectly qualified to diagnose themselves with autism and to say otherwise was literally classist gatekeeping because not everyone can afford a doctor????

See also innumerable contested illnesses like fibromyalgia and chronic Lyme.

This is an interesting comment as an adult who has recently realized I have autism. Where I live there doesn't exist any publicly funded way for an adult to be assessed for autism, you can pay a lot of money out of pocket to get a verification from a psychologist. This isn't like cancer where the medical system will go out of its way to save me. There isn't anything to do to save me. They don't really even care to even know. So the stigma against self-diagnosis is very curious to me.

What's the alternative to self-diagnosis? Where do I go? What's the point of that pursuit? Whether I have autism or not, the path forward is the same either way, I figure out how to cope with my struggles or I don't. There's no pill I need, no specific talk therapy which will change everything. What I needed most was an understanding of why I've been so different my whole life, and I got that without a doctor's involvement.

I think the reason why self-diagnosis is more common in the autism community is very straightforward. When you don't want or need anything from a doctor, you don't have any reason to interact with a doctor. Does that mean people self-diagnose incorrectly? For sure. Does that mean I feel any reservations about self-diagnosing? No, definitely not. It's the only sensible option for me.

I don't doubt that you have good reasons for believing that you have autism, but I am not persuaded by your argument. If someone has a mental illness or disorder, we make various accommodations for that person and take their diagnosis into account when interacting with them. We don't make special accommodations for neurotypical people because by definition they don't need them, by virtue of being "typical". This arrangement depends on an assumption of good faith: if someone tells me that they have a mental disorder and expect me to make accommodations for them on that basis, I assume that they were formally diagnosed with that disorder by someone qualified to do so. If someone is often rude or inconsiderate, I will treat them with a great deal more forbearance and forgiveness if they have been diagnosed with autism (and hence find it harder to read social cues than a neurotypical person) than if they are neurotypical.

If you think you're autistic, but don't intend to mention this to anyone and don't expect anyone to make special accommodations for you, then fair enough. But if you do intend to mention this belief about yourself to other people and for other people to treat you accordingly (as seems to be the case, given that you've just brought it up to me), I think that's dishonest when you've never been formally diagnosed with this medical condition by someone qualified to make that assessment. It sounds like stolen valour.

I think the phrasing "the stigma around self-diagnosis" is a bit weaselly and disingenuous as well. It's not that self-diagnosis is stigmatized, it's just that most people aren't qualified to do it. If anyone could accurately diagnose themselves with medical conditions, people wouldn't spend years and small fortunes training to become doctors or psychiatrists.

If I said that lay people with no medical training shouldn't be performing neurosurgery, I don't think this position could be reasonably characterized as me trying to "stigmatize neurosurgery".

They think they can DIY better than any clinics can help them, that they're fully informed and aware, and that they have a right to pass that knowledge on and push it onto minors with basically no oversight. I have never seen this kind of behaviour in any other kind of group;

You don't spend much time in vaccine-skeptic circles, do you?

Not really, no.

But even then I think "doctors are willing to lie to us for social reasons" is a different kettle of fish to "doctors literally don't know better than me".

Large portions of this very forum think they know better than doctors.

How many people in this forum perform experimental treatments because they think they know better than doctors

I don't think I know better than my doctor, but I am reliant on 2 prescription medications for day-to-day functioning that I do not have a current script for. I know I could get one of them if I subjected myself to a likely year long ordeal of suffering through a series of escalating but ineffective treatments that my insurance and the lawyers at my clinic would insist on before I'd be permitted to take the meds I'm already doing quite well on, and have been for years. The other one my clinic states outright they will never, ever write to any patient, only refer to a specialist with massive waiting lists who, again, will begin a multi year ordeal of useless treatments that may or may not achieve any results. Neither of these meds are drugs you can get high on, have any addictive potential, or could I possibly resell in a million years. The burden is on me to monitor my drug interactions, research side effects etc. So far I'm perfectly capable of this, but I understand many might not be.

though maybe we'd quibble about doctor-skepticism-induced inaction being as costly as equivalent action.

The natural contrarians of today are lucky to have "boiling water" ingrained enough in them to not be questioned.

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